The Lupron Diaries

The Lupron Diaries: Shot #3 and Weekend Happenings

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I won’t bore you with the details from Shot #2, as it was pretty much the same story as Shot #1…quick and painless.

Shot #3, however, hurt like HELL.  Ginger felt terrible about it, but it wasn’t her fault.  I think it was a combination of my laying the wrong way and my tensing up (maybe because I wasn’t positioned right), but I felt every second of it, including the gross sensation of thick liquid going into my muscle.  I even got lightheaded for a couple of seconds, but it wasn’t unbearable.  She laughed and said, “it’ll probably hurt more taking the band-aid off than the shot did.”  I chuckled, but thought she was out of her mind; after a quick hug, we were on the way out.

She was RIGHT, though.  I don’t know what kind of industrial-strength band-aids they use, but I thought I was going to find all of my skin on it when I took it off the next morning.

On another unpleasant note, I think I’m shedding more hair than normal.  It could just be my imagination, but it seems like I’m throwing away more loose hair than I usually do.  We’ll see how that plays out.  Hair loss is a possible Lupron side-effect, albeit an uncommon one, so perhaps I’m just shedding my winter coat like the pets are.

We went to South Carolina this weekend to visit my grandmothers (we go once a month).  I snapped this pic of a derelict house on the way down; they’d cleared out some trees over the last couple of months, which left it exposed, and my mom wanted a picture of it, so I took one for the team and hung out the window at 70 mph to get her a picture.  You’re welcome, Mom;).

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One of my grandmothers is suffering from dementia.  Usually, it only seems to affect her short-term memory (although I’m sure that those who see her on a regular basis notice it in other ways), but this time, she didn’t remember that I’d come to spend a week with them during the summer a few times when I was a kid.  That hurt; she usually regales me with the tale of her and Papa walking in on me calling my parents because I was homesick and picks on me about it. This time, however, I regaled her with the tale of the only fish I ever caught (that couldn’t have been more than three inches long) and how I made Papa take it off the hook because I didn’t want to touch it.  She asked me if I ever got homesick, and I told her I did and we moved on to other things.  Dementia really sucks.

Sundays are always a bit stressful for me; although I love church, it involves a lot of interpersonal activity (and sometimes singing in front of a big crowd), which wears out this introvert.  Joey and I have enjoyed the last two weeks of going and doing something active on Sundays, so we continued that by heading out to Morrow Mountain to hike.

We did the Fall Mountain trail, which is listed at four miles, but after the re-routes they had to do for some fallen trees, ended up being about 4.2.  It’s listed as a moderate hike, and I’d agree with that assessment.  However, it required some log-hopping and balancing to cross a couple of streams, which was pretty harrowing for someone struggling with Lupron clumsiness.

Joey and Indy on the trail:

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We stopped at a rock outcropping about halfway through and something intrigued Indy greatly.  I couldn’t tell what, but snapped a pic of her.

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I didn’t wash off my makeup before heading out to the trail, so I was ultra-fabulous for the hike.

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I think we’re going to keep up this trend of doing a long walk/hike on Sundays.  It’s a great way to decompress and a fantastic way to rack up some miles right at the beginning of the week.   Mitchell will be 12 miles, so we’ve got our work cut out for us.  It’s also nice not to be sitting in front of the tv, which traditionally has been the way we’ve spent our Sunday afternoons/evenings.

We’re also toying with the idea of a day-trip to the mountains to hike on Mother’s Day.  The last couple of years, I’ve skipped church because it sucks too much not to be able to stand up with the rest of the moms.  We’ll see.

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The Lupron Diaries: Side Effects that Suck

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Today is my third shot; halfway there! And while this hasn’t been nearly the horror story that I’d read about, I don’t want to give you the impression that the entire experience is sunshine and rainbows, because it’s certainly not.  Here’s the rundown of the side effects I’ve dealt with  over the last two months.  I’ll focus in on each one in future posts to discuss how I’m dealing with them.

  1. Joint Pain: for the first few days after the shot, my hips and knees hurt pretty badly.  I first noticed it when I was in the bed and Shelli (my kitty) hopped up on my hip to curl up and sleep.  She does this every night (which makes sleeping an adventure since she’s balanced so precariously…I can’t tell you how many times I’ve inadvertently launched her across the room), so it’s not all that unusual, but I saw STARS the first night.  It typically goes away after about three days, so I just make use of the ibuprofen for those days and wait it out.
  2. HOT FLASHES:  man, that first flash was ROUGH.  I was on a conference call that was particularly aggravating, and I felt myself go nuclear.  I got so hot that I started to feel cold, which actually wasn’t all that unpleasant, so I felt pretty successful for having made it through.  This side effect was one of my greater anxieties, because I’m already hot-natured.  I will say, though, that the add-back medication has helped immensely.  I think I’ve only had a handful of genuine “flashes” over the last two months, and they’ve been bearable.
  3. Weepiness:  I won’t call this “depression.”  I’ve been depressed before, and this is nowhere near that bad.  I’d liken it to typical PMS-type sadness; news stories make me want to cry (especially ones about animals) and I’ve found myself reading too many sad stories for the catharsis of “crying it out.”  While it sucks, it’s definitely not that soul-crushing type of hopelessness that comes along with clinical depression.
  4. Irritability/Grumpiness: I’m already a pretty grumpy person, so I’m not sure how much different I am, but I can definitely feel myself get frustrated more easily and there’s been a time or two where I’ve said something snippy that I may not have said if I hadn’t been on Lupron.  Thankfully, for the most part my friends have found my grumpiness to be entertaining, so I don’t think anyone is ready to cut me out of their life just yet.   I’ve not experienced the “Lupron Rage” that I read about; I’ll take some minor irritability over rage any day.
  5. Hungriness:  Holy crap this has sucked.  I went from not wanting to eat anything for two months after surgery to wanting to eat ALL. THE. DAMN.TIME.  I can see how people gain excessive amounts of weight if they’re not paying attention to what’s going on with their body.  I’ve had to make a concerted effort not to eat everything I see and to offset the overeating I do with a healthy amount of exercise.  I’ve lost about four pounds over the last two months; I’d like it to be more, but I’m not going to beat myself up too much about it.
  6. Clumsiness/Lightheadedness: I put these together since most of my clumsiness is a result of feeling a bit lightheaded when I stand up.  There was one incident at work where I barely made it into the bathroom stall before falling down and I ended up cracking my head against the side of the stall when I sat down.  That was a little frightening.  In fact, this one has probably been the most frightening of the side effects, since the possibility of my falling down in front of people is high, and making a spectacle of myself is one of my phobias.  Joey has mentioned a couple of times that he’s a little nervous about my falling off Mt. Mitchell. I just told him that I’d tie myself to him so we’d both go together if I fall.  On a positive note, though, this side effect has improved over the last two months; I haven’t had it nearly as bad the second month as I did the first.

That’s it, guys.  While this clearly isn’t a walk in the park (more like a “stagger through the park while it’s 100 degrees”), it absolutely hasn’t been the horrific experience I read about online.  I know that there are women out there who’ve had a genuinely terrible time with Lupron; I’m not trying to diminish that.  However, if you’re out there and your doctor recommends it as a treatment for your endometriosis/infertility, I don’t want you to feel hopeless and terrified.  It’s possible not only to survive, but THRIVE while you’re on this drug.

The Lupron Diaries: Some Days Are Failures

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In the interest of full disclosure, I want you to know that, although there are days that are six miles walks with hiking boots on:

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There are also days where I don’t leave the recliner, eat an entire box of Hot Tamales, skip my planned three mile workout, and then read sad things until I cry myself to sleep.

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Some days are “Lupron Fails,” as Joey and I call them.  But it doesn’t happen every day.  It doesn’t even happen most days.  In fact, most days are okay, and some are even great!
 

But failures happen.

Yesterday was a failure, but today will be better.
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The Lupron Diaries: The First Shot

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I had my first shot of Lupron Depot on Thursday, February 18th, at noon.  High noon.  Because I’m afraid of needles (and because I’m overdramatic), I treated the appointment like I was being marched down the green mile to the electric chair.  Honestly, if it had been anyone else, I would’ve laughed at them for being so ridiculous.  I mean, seriously?  I’d survived surgery.  A shot in the butt would be nothing.

I would’ve laughed until I saw the size of the needle.

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Guys, it was EVERY BIT of two inches long; even my husband, who is quick to (gently) pull me back to reality when I overexaggerate, admitted that it was one of the longest needles he’d ever seen.  Ginger, my nurse, made the mistake of leaving the box open when she brought the shot into the room.  “Is that entire needle going in me??!!”  Ginger was fantastic, though; she was the perfect combination of supportive and dismissive. “Yep, but it’s no big deal…you’ll barely even feel it; I promise!”

She asked me if I had any questions or concerns about the drug, and I was pretty frank about how nervous I was and how many terrible accounts I’d read online.  She echoed Joey’s comments about folks with positive experiences not generally taking to the internet about them, and she gave me the rundown of what to expect (the most common side effects, i.e., hot flashes and moodiness) and encouraged me to email them or call them if I thought I was experiencing anything out of the ordinary.  She also told me that the menopause-type symptoms probably wouldn’t start for a couple of weeks, but that I may have increased endo symptoms during that time, because your estrogen levels surge before they go away.  Thankfully, she’d allayed all of my fears, but (much to my chagrin), that meant it was time for the jab.

She had me lay down on the table since I told her I was scared of needles (and the fact that I looked like I was about to be given a lethal injection).  “We’ll go into your right side this time…we’ve got to alternate, so next month will be the left.”  Joey came back with me and held my hand, and I braced myself for the world’s largest shot in the ass.

And then it was done.  Just like that.  I can honestly say that I barely felt it at all.  Ginger became my new best friend and the best nurse in the entire world.  After a high-five and a hug, she sent me on my way, told me she was in on Thursdays and to plan my next appointment accordingly so I’d get to see her again.  She also reminded me to make sure I was diligent in taking the add-back medication and not to worry, that everything would be fine and it was going to be worth it to kick this endometriosis.

I had a sore butt cheek for a few days, and believe me, I milked that for all it was worth.  Joey already waits on me hand and foot, but I shuffled around and looked sad and pointed at my cheek whenever I asked for something.  I think it stopped being cute the second day, but he humored me until I really couldn’t justify it anymore because I felt fine.

So then began the “two week wait.”  And not the “fun” two week wait (the one where you wait to test to see if you’re pregnant). Instead, it was the countdown to becoming an overheated ball of emotions that falls down and forgets things.

I felt like a time bomb.

The Lupron Diaries: Lupron Goals

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Needless to say, once I made peace with the litany of terrible side effects I’d read about (even if half of them were exaggerated), I realized that I was going to need to adjust my weight loss goal to be a bit more realistic.  I’d only read one account of someone losing weight while on Lupron, so although I refuse to let myself believe that weight loss is impossible during treatment, I accepted the fact that I probably wasn’t going to be looking at completing my weight loss journey (to the tune of 50-60 more pounds) even if I was extremely diligent with food and fitness.  That was a tough pill to swallow, folks.  I’d already mentally prepared myself to bust ass and get myself to my goal weight come hell or high water, and now I was looking at having to dial that back (and maybe even accept that losing another 10 or 20 pounds would be a struggle).  After much cussing and crying, I re-evaluated and created a new set of “Lupron Goals.”

I decided that I wouldn’t express any weight-related goals in pounds. I know what I have left to lose, and I know that I want to lose as much of it as I can before we were to (potentially) get pregnant.  But I also know that giving myself a number at this point would be self-defeating if the Lupron keeps me from reaching that number as quickly as I want.  As a result, my goals (both weight-related and non) are not number-related accomplishments.

In no particular order:

  • RUN a 5K in its entirety.  I’ve got three scheduled over the next few months (4/23, 5/14, and 6/11).  I’m doubtful that I’ll be running the whole 5K on 4/23, but I do plan to run more than I walk. I’ve tried to become a runner so many times over the last ten years or so, but in the last year, I’ve actually committed and started seeing progress.

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  • Get paid to write.  I’ve wanted to do this for years, and now is the time to start making that happen.
  • Hike Mount Mitchell.  This is the biggie for me.  Joey and I love to hike and camp, and Mount Mitchell is the highest peak east of the Mississippi River. For whatever reason, I feel like making it to the top will be my own way of saying that I kicked Lupron’s ass.  We’re tentatively scheduling the trip for my birthday weekend, which will be a week or so after my final shot.

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  • Not be an butthole to everyone.  Lupron moodiness is a real thing (I’ve learned since the first shot).
  • Not eat everything in sight all of the time.  Lupron hunger is also a real thing (more on all of this in a future post).

So, that’s it. No “be at a current weight by the end of the summer.”  No “stay under 100 grams of carbs every day.”  No “work out 5 days a week.”  I know what’s required to get across the finish line at a race and to the top of Mount Mitchell.  And every step I take toward that is a giant middle finger to the face of this drug that’s defeated so many women.

The Lupron Diaries: What is Lupron and Why Are You Freaking Out About It?

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Yeah, I’d never heard of it either.  I’d never heard of lots of things before we started trying to have a kid.  All of the sudden, my vernacular is filled with acronyms that look absolutely ridiculous to the outsider: AF, BFP, BFN, DTD, BD, DPO, LH, HCG, CM, IB, TWW…ugh, the list goes on.  I swore I’d never be one of those people who wrote like that.  But all of the sudden, you’re on every fertility message board and it’s like your brain just oozes right out of your ears and all of the sudden you’re drooling and squinting to try to see if the result line on the ovulation test is as dark as the control line and your hand is covered in pee.

I digress.

Lupron Depot is a drug that suppresses the production of sex hormones (read: estrogen) and is used for a variety of things, including endometriosis, fibroids, and even prostate cancer for men.  It’s injected, either monthly (3.75mg) or in a larger, 3 month dose (11.25 mg).  If it works, it reduces endometriosis in the body and helps slow/prevent production of new lesions.

Because it suppresses the production of sex hormones, it causes the body to mimic the process of menopause, which is about as fun as getting a shot in your butt every month that puts you into menopause.  There’s an add-back medication (norethindrone acetate 5mg)  that helps with some of the symptoms, but even the drug’s own website is pretty frank that Lupron treatment isn’t a walk in the park.

Side effects include acne, growing a freaking mustache, dizziness, hot flashes, nausea, diarrhea OR constipation (I guess I’m never going to poop right ever again), stomach pain, scaly skin, joint/muscle pain, bone thinning, depression, insomnia, forgetfulness/confusion, and decrease in libido (yay for Joey, eh?) (Source)

So, it’s clearly not a joyful experience.  However, what really freaked me out was the repeated accounts of massive weight gain and fits of rage.  Apparently there’s even a petition to Congress for further investigation to be done into Lupron’s side effects.  It’s alleged to have caused permanent damage and even deaths.  I certainly don’t want to be crippled by joint pain and thin bones for the rest of my life, and I can assure you that dying isn’t on my agenda either. So why am I taking this drug?

It’s interesting what you’ll do for the sake of having children.

My Endo Story: The Lupron Diaries

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Catch up with Part 1, Part 2, and Part 3.

I’d made peace with the fact that we were going to have to put off trying for a kid for six months; in fact, I’d decided that I was going to make the most of the delay and complete my weight loss journey.  It would take some serious work, but surely I could get fifty pounds or so off in six months.  That way, I’d be in the best possible shape to carry a child when (hopefully) it happened, so I wouldn’t feel like I was doing nothing at all during the delay.

Then, I began reading accounts of women who’d taken Lupron.  And they scared the hell out of me.  Massive weight gain, crippling depression, dizziness, clumsiness, joint pain, forgetfulness, diminished mental capacity, bone thinning…no one seemed to have had a good experience on the drug, and more often than not, their accounts were something out of a horror movie; it seemed that no one made it all the way through the treatment before quitting.

Joey asked me over and over if I wanted to go through with it, and he assured me that he was okay if I didn’t…that he was more concerned about my well-being than the possibility of a hypothetical future child.  Conversely, though, he reminded me that it’s rare for someone to take to the internet with an account of a positive experience with a drug, and that I shouldn’t make a decision based solely on the mostly one-sided world of the interwebs.  I’m very thankful to have a husband who’s the voice of reason when I need it most.

Despite the fear, I knew it was our last non-invasive chance for a child, and at this point, we’re not willing to take more invasive measures, so there was no question that I was going to go through with the shots.  Weight gain, though?  I’d lost 44 pounds over the last 1.5 years, and I was scared to death of gaining it back.  Bone thinning?  That doesn’t go away or get better.  Forgetfulness?  I have an insanely stressful job that requires every bit of my brain function most of the time. How was I going to make it through this?

Between the time the Lupron arrived at my doctor’s office on Tuesday and my appointment for my first injection on Thursday, I agonized over my decision to go through with it.  All of these other women suffered, seemingly horribly, and here I was willingly walking into the fiery furnace.  But I also did something else, something extremely uncharacteristic of me: I decided that I was not just going to survive this Lupron treatment; I was going to thrive during it, and I was going to share my experience.  I knew that there would be negative side effects, but I wanted to prove that they were endurable and could be mitigated (maybe even overcome) with focus and diligence (and lots of prayer).  I wanted some poor, scared, woman, searching for answers about her upcoming treatment, to find my story and perhaps some hope that she wasn’t going to end up fat, senile, and riddled with broken bones.

So we got some calcium chews and threw out the junk food, and I registered for a 5K on 4/23 and committed to myself that I would run at least part of it.

And I tried not to think about the fact that I was going to be jabbed in the ass with a giant needle in a couple of days.