Feel Good Fridays

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It’s FRIDAY! We made it through another week!  And you know what that means…Feel Good Friday!

Today’s quote is by 18th Century composer, Wolfgang Amadeus Mozart:

“The shortest way to do many things is to do only one thing at a time.”

I know that many of you, including myself, have so many goals, bills, hurdles, or challenges!  So many things we’d like or need to do, but are overwhelmed by everything on our plates.  Pick one.  Whether it be the easiest, the fastest, the most pressing, the hardest, the cheapest, or the most fulfilling…just pick one.  Focus on that.

Baby steps.  Complete that “one.”  And then pick the next.

Whittle through the bills.

Go on that long-desired vacation.

Learn to knit.

Clean the bathroom.

Catch up on your favorite TV show.

Take a nap.

Save up money for that surgery.

Get a cat.

Cook dinner.

Conquer the world.

Whatever is on your plate, you can do it.  All of it.  Even if it is just one thing at a time.  Do not overwhelm yourself with the whole picture – focus on one thing at a time, and you will accomplish them all, albeit in time.

Have a wonderful weekend!

Yours, Lisa

Have you heard of scanxiety?

Scanxiety…?  It’s a term frequently used in the cancer community.  An overwhelming sense of anxiety before a scheduled scan to check if your cancer has come back.  Am I comparing cancer to Endometriosis? No.  I’m simply stealing their well-coined term.

For any of us Endometriosis sufferers who have had any type of relief either from surgery or medicine, there’s always an underlying fear that it will recur at any time.  The doctors tell us there is no cure.  They tell us it will grow back.  There are a few doctors and EndoSisters out there who swear that if you remove all of the Endometriosis during an excision surgery, it will not return. But even the best Endo surgeons out there have documented cases of their patients having recurrence of Endo growth.

Perhaps some get lucky and it doesn’t return.  But for many of us, it does.

And for many of us, when that old familiar feeling of pain or other red-flag symptoms come back, there’s that terrifying question, “Is it back already?”  Many women can go several years without a recurrence, sometimes decades.  A good friend of mine has her recurrence every 3-5 years.  And other friends of mine have theirs almost every year like clockwork.  And yet others, others have never felt the relief…even with surgery.

Anyway, I ramble.  What is scanxiety?

Many cancer patients have regularly scheduled 3-6 month imaging studies (xrays, ultrasounds, or MRIs) to determine if their cancer has returned after treatment.  The anxiety leading up to these appointments, and the stress of waiting for the results of the imaging studies, can be devastating.  Many patients even develop a form of PTSD due to these constant pressures.  Dr. Matthew Doolittle of the Memorial Sloan Kettering Cancer Center said, “People with more-advanced disease, more pain, or those who have suffered other types of trauma are at greater risk for developing PTSD symptoms during or after treatment.”

The days and weeks leading up to, and following, an appointment are incredibly stressful and an emotional rollercoaster for Endometriosis sufferers as well.  The pain of the transvaginal ultrasounds, fasting for blood tests, possibly having a fear of needles, the confined and loud space of an MRI machine.  What if the doctors suspect the Endometriosis is back?  Expensive surgeries, stacking medical bills, 3-6 weeks of recovery time, more prescription medication.  The thoughts are endless:

How am I going to pay my bills?

What if I lose my job?

How am I going to care for my family?

How am I going to get through this?

Will it ever stop?

Will it never end?

It’s understandable why every EndoSister I personally know goes through scanxiety before an appointment or exam: irritability, fear, depression, anxiety, worry.  And these deep, dark feelings, endless surgeries, and viscous cycle have led several Endometiorisis suffers to end their own lives.

So, yes, I’m stealing the term from the cancer community.

But how to handle it?

It may sound cliche, but positive thinking may be the first step!  Dr. Katherine DuHamel of the Memorial Sloan Kettering Cancer Center says, “Telling yourself that it’s only a matter of time before you relapse and other things that paint a worst-case scenario is not uncommon…Such unhelpful thoughts can be identified during cognitive behavioral therapy and the evidence for, and against, these thoughts can be weighed. Patients are asked questions such as, ‘What else can you tell yourself?’ and ‘How else can the situation be interpreted?”

And it has been scientifically proven that stress has an effect on Endometriosis (read more here).  So how do we try to reduce our stress levels while suffering from scanxiety?  Or at any point in our lives?  Try these tips:

Breathing: Deep, focused breathing has been shown to reduce anxiety, and calm emotions and thoughts.  There are several techniques for deep breathing, and I personally will begin using the 4-7-8 Technique (you can read more about it here).

Exercise: Physical exercise pumps up endorphins…the “feel goods.”  It may also help us forget the stresses of the day, shedding calories and stress! A win-win!

Listen to Music: Soothing music can decrease heightened cortisol levels (aaaugh, STRESS!), which may lead to relaxation and less tension.  Also, see if you can bring your personal music player to an appointment or examination.  I do this with my dentist appointments and it really helps.

Massage: Massage has been known to relax muscles, increase endorphin production, ease tension, and relieve headaches.  Massage also releases serotonin and dopamine into the body, which deepen a sense of relaxation and calm.

Meditation: A 5-minute meditation may quickly restore the peace you were feeling prior to the stressful environment.  Just get away for a few minutes in a quiet place. Sit or lay down, close your eyes, take a deep breath, exhale slowly.  Imagine yourself in one of your favorite places, feel the ground beneath your feet, imagine the scents and sounds around you.  Steady your breathing and relax your tense muscles. Let it go, calm down, relax.  Calm, collected, and ready to face what’s next.

Professional Help: If you so desire, seek the advice of a professional, such as a psychologist.  Sometimes it helps to talk to someone, and sometimes it helps to talk to a neutral, unbiased party.

TARP Method: Tune into your body’s signals, triggers, and early warning signs to help realize when your stress levels are rising.  Analyze the source of the stress. Respond by dealing with the cause of your stress, and helping calm its effects on your body (aka calm down). Prevent future stresses by developing an earlier response to stress, calming faster, and even cutting the cause of the out of your life.

Yoga: Yoga not only stretches and maintains a limber body, but also includes breathing exercises which further decrease heightened cortisol levels and helps bring a sense of peace and calm.  However, yoga for women with Endometriosis can be tricky, based on the placement of adhesions inside the pelvic area or anywhere inside the body.  Melissa Turner and Allannah Law have developed a yoga program that is intended to ease any adhesion-stress and help those who suffer from Endometriosis.  You can view her page here.

For more fantastic tips on dealing with scanxiety, check out the blog by Tori Tomalia, a two-time cancer survivor.  She’s written a blog just for coping with scanxiety (click here) identifying her own personal tips and tricks that helped her.

Most importantly, remember that you are not alone.  Talk to your partners.  Talk to your EndoSisters.  Talk to your doctors.  Reach out for love and comfort and understanding.  This disease already makes us feel broken and alone.  Don’t let the anxiety leading up to appointments and examinations do the same.

Grace, this one’s for you. ❤

Yours,

Lisa

Resources:

CureToday.com

Memorial Sloan Kettering Cancer Center

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Feel Good Friday!

It’s been a week since my last blog? A week?

Oh man, what a week it’s been…

My weekend was commandeered with an Endo pain flare-up.

My Jeep had a window smashed and a bag stolen.  It will take 2 weeks for a new window to be installed.

Work has been incredibly busy.

I’m studying for a big exam coming up.

Ugh.  And this is the first time I have a moment to even think about the Bloomin’ Uterus blog.  I’ve missed this release.  But, today…today is Feel Good Friday and I couldn’t miss it!

Today’s quote is by Dr. Steve Maraboli, a life coach and motivational speaker:

“You must learn to let go. Release the stress. You were never in control anyway.”

He’s right.  There’s absolutely nothing I can do about getting the window any faster.  There’s nothing I can do that I haven’t already done about the bag, it’s missing contents, or replacing them.  There’s nothing I can do about the attitudes and habits of bad people who feel the need to violate other people’s things.

I can continue to study for my exam.  And I can get through today.

We’ve made it to another Friday. The end of the week.  The beginning of the weekend.  Take a deep breath. And let it all go.

*whew*

Feel Good Fridays

Today’s quote is by an unknown person.  A stranger.  An anonymous shadow.

Total self-esteem requires total and unconditional acceptance of yourself. You are a unique and worthy individual, regardless of your mistakes, defeats and failures, despite what others may think, say or feel about you or your behavior. If you truly accept and love yourself, you won’t have a driving need for attention and approval. Self-esteem is a genuine love of self. Stop all adverse value judging of yourself. Stop accepting the adverse value judgments of others. Purge yourself of all condemnation, shame, blame, guilt & remorse.

And it’s meant for you to read. Yes, you.  Let these words sink in.  And begin to embrace you for who you are.  Don’t let the bad thoughts, judgments, and shame drag you down into the muck.  Feel free to be yourself.  And love yourself.

Cataracts? …

CataractSo today I had my two-year eye exam.  You know: you go in ever two years to have your eyes checked and your eyeglass prescription updated.

About 8 years ago I learned that I have a benign cataract in my left eye, located just to the outside of my pupil.  My doctor back then told me it’s benign, it doesn’t grow, it just sits there a casts a shadow.  However, it’s not visible to me, and it will never affect my eye sight.  She surmised I was born with it : it may be due to my premature birth (I was 3 1/2 months early) and have likely had it my entire life.  Every two years since, I’d been told by the next doctor that I had a benign cataract on my left eye, and that it was just sitting there, doing nothing.

Two years ago, I went in for my usual eye exam and the presence of my benign cataract was confirmed, yet again.  There was no mention of any other formation of any other cataracts, or of any growth of the oldy-but-a-goody.  Life was good.

I’ve become accustomed to going in every 2 years only to be told I need a slightly stronger prescription.  They all blamed it on the fact that I sit at a computer all day and it just wears on your eyesight.  So wasn’t expecting anything different this time.  Yeah, my night vision has recently been getting blurrier and blurrier, the headlights and stop lights and brake lights casting more of a halo and glare than usual.  It’s been getting harder and harder to read the reflective road signs as they balloon out of proportion. Squinting more and moving closer and closer to the computer screen, embraced by it’s glow.

But today…today was different.  My doctor discovered the existence of a new, a second, cataract in my left eye.  One that IS affecting my vision.  One that has severely increased my prescription…and will continue to do so. One that wasn’t there two years ago.

Her first question, “Have you been taking Prednisone?”  Um, what? “No, but I’m now on birth control.”  Her retort was a simple nod of the head and a, “Mm-hmmm.”  I also let her know I had been on Lupron for six months, but she had no idea what that was.  I explained it shuts down your body’s estrogen production and casts you into chemical menopause.  Another thoughtful, “hmmm” escaped her lips.

Which caused me to go “hmmmm” and hit the books.

I am now at 20/30 vision.  She says once I hit 20/40 vision, I will be recommended for cataract surgery.  I’m sorry, what? Cataract surgery? I’m 36! I kind of squealed at her, “Aren’t I supposed to get these when I’m old and like 80?!?”  She agreed, but said sometimes these things develop.

**UPDATED October 10, 2017** I went to the eye doctor in August 2017 since my vision has been getting blurrier AND I was seeing double…the cataract has doubled in size, and my vision was 20/50.  I was referred to an ophthalmologist and had cataract surgery on October 2, 2017.  My left eye vision is now 20/10!!  AND (surprise!!!!) I have a cataract on my RIGHT eye!  Surgery is now scheduled for November 6, 2017.  Both my optometrist and ophthalmologist agreed it was likely my premature birth combined with the Lupron Depot that caused my early development of cataracts.

Drayton, Lisa (1)
Photo of my cataract, 8/1/17
Drayton, Lisa (2)
Photo of my cataract, 8/1/17
Drayton, Lisa (3)
Photo of my cataract, 8/1/17

What is a cataract?

Cataracts are a clouding of the lens of the eyeball.  It causes blurred vision and even blindness.  It occurs in older adults and more than half of Americans over the age of 80 will have cataracts or have had cataract surgery.  Many people begin to develop small cataracts in their 40s or 50s, but they do not become a problem for their vision until their 60s.

If you wear glasses and have a smudge on the lens, your vision through that lens is blurred . If you’re a photographer and likewise have a smudge on your lens, the photograph or image may be blurry or smudged.  Your lens of your eyeball works the same way; if there’s a cataract, your vision will appear blurred.

Cataracts may develop slowly over years, or be accelerated by many factors.  They may even develop over a few short months.  But what causes cataracts?  Could be Diabetes, could be smoking or drinking alcohol, could be sun exposure, could be diet, or it could be drugs.  It can even just be hereditary.  It could be.  However, other factors may come into play.

ADT and Cataracts?

ADT, also known as Androgen Deprivation Therapy is a hormone therapy used to treat prostate cancer.  Prostate cancer cells are fed by male hormones, especially testosterone, and ADT is meant to reduce those hormone levels.  The reduction of those levels slows or shrinks the growth of the prostate cancer cells.

One such drug used for Androgen Deprivation Therapy is leuprolide, aka Lupron.  The same Lupron that is used to treat Endometriosis in women.  And we share similar side effects : lack of libido, hot flashes, nigh sweats, increase or decrease of chest size (moobs & boobs), fatigue, bone loss, depression, etc.  Not an easy ride for either sex.

In 2007, Medical Principle and Practice published a study of a 52-year-old man who had developed a cataract in his right eye only 4 weeks after his ADT injection of Zoladex (which is also a GnRH that is used to treat Endometriosis).

In 2010, Fox News reported that prostate cancer treatments using ADT’s side effects such as weight gain, dyslipidemia, and insulin resistance may increase a man’s risk of developing cataracts.  In October 2010, the FDA pushed for stricter warnings on ADT drugs regarding the risks of developing heart disease or Diabetes. It appears due to the increased risk of developing Diabetes or obesity because of ADT, cataracts may also develop.  A study of 66,000 cancer patients occurred and half of them had received some sort of hormone therapy during the first six months of their cancer treatment.  Six months (sound familiar for you Lupron EndoSisters?).  For every 1,000 men, 111 new cataracts were diagnosed.  The authors of the study estimate that 5% of the cataract cases may be attributed to their Androgen Deprivation Therapy.  The study actually concluded that, “Gonadotropin-releasing hormone agonist use was associated with a modest increase in cataract incidence…Further study, preferably prospective in design, is needed to provide additional evidence to support or refute these findings.” Gonadotropin-releasing hormone agonist?  It’s also known as GnRH…which is what Lupron is…

Lupron and Cataracts?

Hands Off Our Ovaries has published (in .doc format) testimonials of women who have taken Lupron, and shared their horrific side effects and personal stories.  One woman, Wendy, was diagnosed with cataracts at the age of 38 after taking Lupron to help with her IVF treatments.  Her eye doctor asked if she ever took fertility drugs, and that she was only “one of many” who had since developed cataracts.  These were heard, among other topics, before the Subcommittee on Science, Technology, and Space  of the United States Senate 108th Congress in 2003.

Unfortunately, I cannot locate any studies or evidence specifically tying together (or even suspecting) Lupron Depot treatments (or any GnRH for that matter), women, and cataracts.  They just don’t exist.  Almost as if nobody has asked.  They’re looking into it with men…but not women.  Well, not yet.

Other Drugs and Cataracts?

NSAIDs (Naproxen, Ibuprofen) may also put you at a higher risk of developing cataracts.  The folks at Natural Eye Care believe, “NSAIDS (ie, aspirin, ibuprofin, advil, meclofen) are photosensitizing drugs (drugs that increase your sensitivity to the sun) that absorb light energy and undergo a photochemical reaction resulting in chemical modification of tissue. They can make you more susceptible to cataracts and macular degeneration” and “many birth control pills have make you more sensitivity to sunlight and can result in chemical modification of tissue. They can make you more susceptible to cataracts and macular degeneration.”

As usual, there’s a flip-side to these blogs, and today is no different.  NSAIDs are also the leading drug used to address discomfort and inflammation in patients who have just undergone a cataract surgery.  It may also help prevent post-operative complications and edemas.

Cataract Surgery

Surgery is the only effective way of dealing with cataracts.  The clouded lens is removed, and a clear implant is put in its place.  *Voila* clear vision is restored.  It’s usually an out-patient procedure, and may only take a few days to fully recover.  And 90% of people who undergo cataract surgery in the U.S. have  success rate and recoup their clear vision.

Advances in Cataract Surgeries and Permanent Treatments

The National Eye Institute has ongoing studies and research efforts for best how to prevent and treat cataracts.

There are also constantly new and better ways to have cataract surgery.  Like all other realms of medicine, it’s advancing : there are new types and materials of of lens implants and now there are laser procedures (rather than scalpel).

A Canadian physician, Dr. Garth Webb, has even created the “Ocumetic Bionic Lens,” which would replace your natural lenses with bionic ones, promising perfect vision.  The surgical procedure is similar to cataract surgery; however, clinical animal trials are still pending and it could be two years or longer before the Bionic Lens is available in Canada.  For more information on Dr. Webb’s invention, or to help people around the world regain their eyesight, he’s developed a foundation, Celebration of Sight, or you can also check out Ocumetrics Technology Corp.

What Now?

Now we wait.  My eye doctor wants me to pay careful and close attention to the vision in my left eye.  Test it from time to time by covering my right eye and gauging my cloudy, blurred vision.  If it gets worse, see her in a year.  Otherwise, I will see her two years from today for my next exam.  And we’ll see then how it’s doing.

And if birth control pills really do increase my risk of developing cataracts, and I’ve already developed one, do I need to stop taking the pill?  I seriously need to have a long talk with my physician…And if I stop the pill, what will happen to my Endo?  My periods? My pain?  And if I don’t stop the pill, will my cataract continue to grow and conquer the vision in my left eye?

The thought of ending the Magic Pill that keeps me pain-free at the thought of saving my vision is a terrifying Catch 22.  I can only wait to see (oh, there’s a pun) what the future holds.  Wait for my next physician appointment, wait for my next eye exam, and make a decision then.

PS –

I know better than to blame every little thing on my condition, my medications, and my medical decisions.  So perhaps the cataract did form purely because I’m getting older.  Maybe that’s true.  But maybe, just maybe, my body reacted to the medication that I put into it (years of Naproxen, Midol, and Ibuprofen; six months of Lupron; and now birth control pills), and maybe I am not alone in this journey.  Maybe there are other men and women who have developed cataracts after using Lupron Depot, birth control, ADT, or GnRHs.  If it’s a possibility, then it’s a something that needs to be further addressed and researched by our great and talented medical and scientific community.

Do you have any thoughts?

I would love to hear them.  Please.   For the first time in several months, I’m scared again (even though I know I won’t know didley-poop for the next two or more years).

*Updated 8/2/17*

Resources:

All About Vision.com

Associated Ophthalmologists

Cancer.Org : ADT

Cataract News Today

CT News : B.C. Doctor Says Perfect Vision Possible with Bionic Lens

DocShop.com

Drugs.com

EyeDocNews : Are Cataracts a Side Effect of Prostate Cancer Therapy Designed to Suppress Testosterone?

Fifth Avenue Eye Care and Surgery

Fox News : Prostate Cancer Treatment May be Tied to Cataracts

Fox News : New Cataract Surgery Eliminates Need for Glasses

Hands Off Our Ovaries

Medical Principles and Practice (2007: Article) Luteinizing Hormone-Releasing Hormone Analogue-Induced Cataract in a Patient with Prostate Cancer

National Institute of Health, National Eye Institute

Natural Eye Care

University of Rochester Medical Center

U.S. Government Publishing Office : (2013) Cloning: A Risk For Women?  Hearing before the Subcommittee on Science, Technology and Space of the Committee on Commerce, Science, and Transportation, United States Senate, 108th Congress

U.S. National Library of Medicine : (2010, Abstract) Androgen Deprivation Therapy and Cataract Incidence Among Elderly Prostate Cancer Patients in the United States

U.S. Food & Drug Administration : FDA Drug Safety Communication: Update to Ongoing Safety Review of GnRH Agonists and Notification to Manufacturers of GnRH Agonists to Add New Safety Information on Labeling Regarding Increased Risk of Diabetes and Certain Cardiovascular Diseases

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Feel Good Fridays

So here we are, at another Friday (already?!)!  And you know what that means! A little bit of uplifting, feel goods to get you through your weekend.

Today’s quote is by musician, Criss Jami:

“To share your weakness is to make yourself vulnerable; to make yourself vulnerable is to show your strength.”

This is so very true!  Hang in there, friends!  And know that it is okay to open yourself up to others and let them in…

Have a wonderful weekend!

~Lisa

Life After Lupron

lupronSo once or twice a month, our little group of EndoSisters gets together for food, drinks, hugs, laughter, tears, and support.  Tonight was one such meeting.  And they’re always amazing, regardless of how many, or how few, people are able to attend.

One of my EndoSisters brought up an incredible question this evening, which inspires tonight’s blog:

Why isn’t there more info out there about life AFTER Lupron Depot?  There’s plenty out there about life before and during, but not after.

So, I’d like to create an ongoing and open “testimonial” area, so to speak, for women who have been on Lupron Depot to write about their lives now.  How long did it take to leave your system? Do you have any residual side effects? Has it changed your life for the better? The worse?  Did it make one lick of difference?  Would you ever go on it again?

Interested in submitting?  Submit a comment below and I’ll post your experiences on this page.  Be as detailed as you want.  Let it all out…there’s no judgment here.

Interested in reading other people’s experiences after Lupron?  Scroll down and read.

Feel free to share your experiences. We can only learn if we share.  I thought I was the only one who had tingly, sensitive skin until a brave EndoSister brought up here own continuous skin sensitivities.

It’s not the harmless medicine our physicians lead us to believe.

Truth, Theory, or Tall Tale?

Any gynecologist can surgically remove Endometriosis.

TallTaleEndometriosis is largely considered a gynecological disease.  So it makes sense that your gynecologist would be the one to suspect it, open you up, remove, and diagnose the disease.  Right?  Wrong.

Although some of us have been lucky enough to have gynecologists who are skilled Endo excision surgeons; many women are not.  Some physicians will never even suspect Endo, or claim it’s “all in your head,” denying any further diagnostic tests or studies.  Some gynecologists simply will not perform a laparoscopic surgery, claiming a continuous regimen of pain pills and injections will suffice to mask the pain.  Others will open you up to confirm the presence of the disease, only to sew you back up and refer you to a “qualified surgeon” for the removal of any Endo and/or adhesions.

Not all doctors are created equal.  And it’s unfortunate.  And not all women with Endo have it in the same spot.

Your gynecologist or excision surgeon may be able to remove Endo from your pelvic area and some of your torso; however, if Endo is found in other locations such as the lung, spine, or brain, you’ll be referred to a surgeon specializing in those areas of the body.  It is not purely a gynecological disease.

It is purely an insane mess.