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One Inch (And Twenty-Five Pounds) Tall

*deep breath*

Hi everyone.  It’s me, Jennifer.  You remember me, right?

I’m the girl who promised she’d blog every day of her fortieth year and kicked off her return to the blogosphere with an “online fat self-intervention.” (see this post and this post if you need a refresher)

I’m also the one whose spring and summer were spent learning about, fearing, talking about, and running from atypical complex simple endometrial hyperplasia. (see pretty much every post to date)

The one who loves to write, yet can’t commit to blogging and bloviating daily? 

Yep, same girl.

You guys know me.  I’ve been allllll about the personal accountability here.  From the weight and self-esteem issues to giving up soda (which I’m still not drinking, let me add!  I’ve become a total tap water snob.  I only drink bottled, thanks, and lots of it)…to the hyperplasia, quest-to-keep-Jen-cancer-free, and the promise to take better care of myself…all of these things have been hashed, discussed, shared, and microscopically dissected, both here on my blog and offline with friends and family and anyone within hearing range.  I’ve not been a faithful blogger, but when something happens of note as it pertains to these topics, I always seem to return to all of you, writing and sharing what has happened so that (a) more people than my husband and I know what has happened, and hopefully (b) all of you will keep me accountable.  Even if you don’t call me or EMAIL me or tweet me 25 times a day (“Did you walk yet today, Jen?  When’s the next D&C scheduled, Jen?  Are you still taking your Megace, Jen?”), I know that you know what’s going on, and somehow the fact that you know that I am walking this road makes me feel accountable.  Because something else of note has happened (and I need an accountability check in a big-assed way), I’m again taking to the keyboard and bloviating to all of you.  Kudos if you’ve read this far.  Chocolate chip cookies if you make it all the way through.

(Before we go any further, there’s a piece of the story you need to know.  If not, the rest of this won’t make any sense.  In my spring/summer 2011 quest to “Get Jen Healthy,” I dropped 55 pounds.  On to the story…)

So yesterday, my daughter and I were enjoying the last few days of our holiday Christmas (the holiday is called Christmas, we’re Catholic and we celebrate it, get over yourselves) break and were doing some shopping.  Out of the blue, my throat started hurting.  Badly.  Ever the water addict, I had a cold bottle with me in the car.  Sure that it would make my throat ailment better, I took a big swig.  Wrong.  Hurts worse now, but “A” for effort there, Jen.  By the time we finished browsing and buying at Pier 1 Imports, I couldn’t take it any longer.  We stopped for some amazing fro-yo in an effort to completely and totally deaden my throat (which worked, temporarily anyway).  By the time we got home, my energy level had completely bottomed out.  After talking with the nurse at my doctor’s office, I was told not to self-medicate again (hey, the leftover-from-my-last-D&C Naproxen Sodium was just sitting there, and it’s prescription strength pain medication!  I thought it would make me feel better!) and to come in and be seen right away.  So I did.  Viral Pharyngitis, they told me.  A viral sore throat.  Not strep, but here’s a script for some antibiotics if you still feel like you’re dying on Tuesday.  I tuned out most of the it’s-not-strep convo because I was so upset about what happened before they’d even swabbed my throat for their rapid strep test.

They weighed me.

Now…(being honest and accountable, part #1), I have a confession to make.  In the fall, I fell off the diet wagon.  Hard.  For whatever reason (and truly, I have no idea what it is), I completely and totally lost my diet mojo.  Gone was the intense urge to document every single calorie and every single walk on my My Fitness Pal account.  Also abruptly missing was my desire to walk 30 minutes a day.  Instead of fighting back, I let myself remain off the wagon, eating whatever I wanted and hoping no one would notice.  Then the holidays hit, and, well, who doesn’t overeat during the holidays? (Or so I told myself)  I would have guessed that I’d gained maybe five pounds back.  Ten tops.  No more than that.  After all, my clothes were still loose and I had lots of energy.  Plus, I was still drinking water like crazy, and water is a huge fat-flusher.  I still had the occasional, “Wow, Jen, you look great!” compliment thrown my way, so I couldn’t have REALLY gained any weight.  No more than ten pounds, which could very easily be lost once 2012 began and my New Year’s Resolution to return to healthy living kicked back in.  And then I stepped on the scale.

Twenty-five pounds.

I gained twenty-five pounds.

TWENTY-FIVE POUNDS!!!!!!

How in the hell did I gain twenty-five pounds in four months?  Who does that?!  Is that even POSSIBLE?

I felt an inch tall.  Well, an inch and twenty-five pounds tall.

So you can imagine how well the rest of my appointment went.  Guilt, heartbreak, sadness, worry about the inevitable disappointment my doctor and oncologist will have when they see me in February….but most of all, panic that I’ve harmed my hyperplasia recovery.  What’s done is done, my husband said, but really?  Twenty-five pounds of damage?  The PA I saw at the clinic told me not to beat myself up about this.  In fact, her exact phrase was, “Give yourself a break.  Everyone has ups and downs when they are losing weight.” (“Twenty-five damned POUNDS of ups and downs?” No, I didn’t ask her that, but it took an act of God for me not to).  I made a commitment to myself right then and there (being honest and accountable, part #2) to take back my life and regain control of this situation.  I couldn’t fix the past, and I certainly hoped that my actions hadn’t set back my hyperplasia recovery/quest-to-keep-my-uterus, but what was done was done.  Being overweight and getting sick in the first place were both caused by me being a passive participant in my own health care.  No longer.  I’m back on track.  I ate a salad when I got home last night, and not the delicious. butter-drenched grilled cheese sandwiches my husband and daughter ate ((lucky ducks).  I also walked (only ten minutes and not thirty like I used to, but it felt good.  I guess I was afraid it would knock me out, especially in light of the fact that I wasn’t feeling good, but it didn’t.)   In a few moments, my husband and daughter and I are going to take a long walk outside and enjoy this unseasonably warm and beautiful weather we’re having, and come Tuesday when I am back at work, the thirty minute walks resume.  I have been blessed with so much support at the office, everything from people cheering me on and complimenting my appearance to multiple requests to “please come get me before you walk, Jen, so I can walk with you.”  There’s absolutely nothing I can do about my wagon-fall, but I can sure as hell make the change I need to make to get back on track.  And so here I am, bloviating and babbling and telling you all of this in the hopes that you holding me accountable, even silently, will help me to keep moving in the right direction.

So, how many batches of chocolate chip cookies do I need to bake…?

Guarded Joy

Blink, blink, blink.

There sits my cursor again, dutifully and steadfastly waiting for me to keystroke words of wit or genius or to bloviate about the goings-on of my heart, my day, my world.  I have some pretty big news to share, but the words aren’t coming easily.  It’s good news.  Very good news.

I got a call today from my doctor’s office.  The pathology report from last week’s D&C is in.  My hyperplasia appears to have improved.  I am no longer considered as having atypical complex endometrial hyperplasia.  The diagnosis has been upgraded (my word, not my doctor’s) to atypical simple endometrial hyperplasia.  Specifically, they’re calling it focal atypical endometrial hyperplasia, with “focal” meaning that the adverse tissue is confined to a small location.  My doctor said that my condition “seems potentially improved” and that it is “definitely not worse.”  She wants me to consult with the gynecologic oncologist again to get her thoughts on whether or not we should proceed with the hysterectomy.  In a second conversation with Kathy (my surgeon’s nurse), she said that she’s seen time and time again women who take Megace (the same medication I am taking) improve and no longer need hysterectomies.  I am encouraged by the fact that four months on this medication (most of which at an accidental lower dose, let me add), brought me to the point I’m at today.  Of the four types of endometrial hyperplasia, I am now at the “third worst,” if you will – two steps away from uterine cancer and not one.  I am waiting for my oncologist to call me back with an appointment time, and will continue to take the Megace until we reach a decision about next steps.  My research tells me that women with atypical hyperplasias can take up to twice the dose of Megace I am taking for up to one year.  If my oncologist does recommend the hysterectomy, my plan of attack will be to ask her for six more months on double the medication, with a repeat D&C in February to see where we stand.  If the hyperplasia is still there, I will concede defeat and have the hysterectomy.  If not, well…not.

I am having a hard time processing this information.  I should be over the moon, jubilantly dancing and singing and thrilled that I am one step farther away from the invasive hysterectomy I thought for sure was so imminent.  But I’m…not.  Cautious happy optimism, perhaps?  Guarded joy?  I’m too afraid to give this amazing news the joy it deserves because I fear the worst.  Maybe I am just numb?  Maybe 24 hours will help this beautiful blessing of an update sink in and clarity (and squeals of joy) will come?  I feel so silly.  And foolish.  Almost like an ingrate.  I am grateful.  Just worried.

Thanks again to all of you for the continued outpouring of love and prayers and support and well wishes.  I could not do this absent all your love and support.  I just don’t think I could have come this far.

The Sacred Geometry Of Chance

“He deals the cards to find the answer.  The sacred geometry of chance.  The hidden law of a probable outcome.  The numbers lead a dance.”  –  Sting, “Shape Of My Heart”

Hello Internet.  I’m sorry I haven’t written since last Thursday’s D&C.  The procedure itself “went beautifully” (my surgeon’s words) and, again, I had a wonderful experience with the staff at Menorah Medical Center.  I wasn’t anywhere near as groggy or sleepy, and once I woke up, I stayed awake.  The bleeding was very minimal, and I had no cramping.  My anesthesiologist and I hit it off beautifully.  Ever have one of those moments where you meet someone and you feel like long-lost, old friends?  That was Dr. David and I.  We laughed and talked and talked, and he promised me he’d come and see me in recovery.  Since I was so groggy last time, I said, “But I won’t remember you or be alert enough to talk to you.”  He smiled and said, “Oh, you’ll be alert.”  And I was.  We talked about music and how convinced he is that I should quit my day job  and teach vocal music to little children.  We talked about our children, love, and life.  He was wonderful, as were my amazing nurses, and it was, again, another amazing and wonderful experience at Menorah.  I wasn’t at all scared, and I did well.  Until this weekend….

…I spent most of Friday relaxing, minus the few hours in the morning that I went shopping and then that evening, when my bosses and family and I went to First Friday in the Crossroads Art District.  I then spent the majority of the next day, Saturday, back-to-school shopping and enjoying tax-free weekend with my in-laws across the Missouri border.  I started feeling unwell, and was horrified to discover that I was bleeding.  Heavily.  I called the doctor on call, who assured me that bleeding was normal 7-to-1o days following a D&C (but why did it start NOW, I wondered?), but warned me to stop pushing myself.  No more being out-and-about.  Shopping ends.  Go home, put your feet up, and do nothing the rest of the weekend.  We came home and I slept for about 15 (!!) hours.  I didn’t realize how exhausted I was.  I feel a lot less wobbly today, and I spent the majority of the day taking it easy, minus the week-ahead grocery shopping and yummy-casserole-making and laundry-doing I felt I had no choice but to do.  Life goes on, regardless of whether or not momma’s sick.  I feel better physically and I’m heading back to work tomorrow.  No more keeping my feet up and relaxing the days away (which, truly, is fine by me….this whole “sitting around doing nothing” thing gets very old very quickly.)

So now…now we wait.  The pathology report should be in this week, and we should know by Friday whether or not a hysterectomy will be the next step on my journey.  As I mentioned when we last spoke, the whole thought of losing my uterus is frightening to me.  The enormity of it hit me today and I cried.  I’m terrified of the procedure itself.  It’s a significant and major surgery, and I am not healthy enough yet for it.  I’ve had major, major surgeries before, and I absolutely hate how I feel afterward….for weeks afterward.  Like a patient and not a woman.  Like a science experiment and not a person.  More than anything, I am heartsick for the potential loss of my uterus.  We’ve had this conversation before.  It’s old news.  Everyone knows that Jen doesn’t want to lose her fertility.  I am having a horribly hard time letting go of this fear and being positive.  Everyone…wonderful everyone tells me to be positive.  And they’re right! I’ve done everything that my doctor and my oncologist have told me to do, and I can do no more.  I dutifully took my Megace.  I had my D&Cs.  I let go of the fear and the tearful nights and I went on with my life.  I did what I was told to do and now, this situation is out of my control.  The worry is foolish and accomplishes nothing, but I can’t shake it.  My oncologist told me that the medication I’ve been taking can reverse early stage endometrial cancer, so the likelihood is very, very strong that it can reverse my atypical complex endometrial hyperplasia.  I want to be positive and want to believe so badly, but I…can’t.  If I believe and if I put my faith in this beautiful notion that this part of my journey is over and that I won’t lose my fertility, only to learn later that I do indeed need a hysterectomy, I will be devastated.  I’ll feel I lost twice,  Once to an illness I couldn’t beat and once to myself, for filling my head with false hopes and well-intentioned deceptions. Isn’t it better to prepare myself for the inevitable worst, so that, no matter what comes, I’m prepared?  Belief or worry, at this point, it doesn’t matter.  The numbers lead the dance right now.  Did we have enough time on the Megace to fight this disease?  Or does my pre-cancerous condition remain in spite of our best efforts?  This sacred geometry of chance, with all its angles and sharp turns, is so unbelievably scary to me.

Worry

So tomorrow is D&C #2, another major milestone on my journey to wellness.  I feel badly.  My goal from the start was to continually document the quiet storm within me – atypical complex endometrial hyperplasia – and I feel like I’ve let you down by not having been more consistent about my sharing over these past several months.  In truth, those “last several months” have gone amazingly well (shingles aside *sigh*).  I felt removed from what was going on.  I stopped considering myself a “sick person,” and focused instead on life and the world around me.  My family.  Friends.  Work.  Laughter and love.  Joy.  I almost never gave being sick a second thought.  Now, as I face my second surgery, it all comes right back up to the surface.  Oddly enough, it’s not the procedure itself that causes me concern this time around.  In fact, I’ve had (and survived quite well) a D&C before, and have absolutely no doubt that I will do so again.  What worries me tonight is what we’ll find.  Did the Megace do as we’d hoped?  Did the hyperplasia subside, or will a hysterectomy be necessary to keep me alive?  The unknown is frightening to me, but nowhere near as frightening as the thought of losing my uterus.

Worry is like a cancer, don’t you think?  It’s violent and destructive and consuming.  It robs you of your ability to focus on the good around you, while clouding otherwise clear and healthy judgment and making situations appear more treacherous and cumbersome than they truly are.  This morning on the commute in to the office, the worry suddenly hit me.  Hard.  Out of completely nowhere.  With no time to catch my breath.  I cried, not because of the fear of the procedure, but because I so tremendously fear that the medication will not have worked and that a hysterectomy will be my next milestone.  I cried because I didn’t want to lose my fertility, although at nearly the age of 40, I am far too old to become a mother again.  And I cried because I didn’t want to lose my womb.  Here’s the part I don’t understand.  I had gallstones in my very early thirties…the worst pain of  my life (sorry labor, you’ve been beaten).  Once we figured out that my gall bladder was to blame, I couldn’t wait to get it out.  It was an unnecessary organ that was causing me harm.  Get out.  Good riddance.  Well, for all intents and purposes, isn’t my uterus the same?  It’s a no-longer-necessary organ that has a strong potential to become cancerous.  Why, then, is the thought of losing it so unbelievably terrifying to me?  It doesn’t make any sense.  I know that the loss of my uterus won’t redefine me…won’t take away the fact that I am a woman.  But maybe, just maybe, it hurts because for a period very early in my life, I was defined as a female strictly because of my anatomy.  It was a core part of who I was.  Who I am.  It enabled me to become a mother.  Because of it, I have a beautiful little girl, and I gave my husband a gift I thought for certain I’d never be able to give him.  Maybe that’s why it hurts so much?

I cried the entire way in to the office this morning…just consumed with the worry that I’d have to have a hysterectomy.  Being surrounded by wonderful colleagues and enmeshed in an insanely busy schedule kept my mind off of the worry, and I was so unbelievably grateful.  But tonight, at 10:00 in the evening as the world prepares to bid farewell to this day and begin anew tomorrow, I’m worried.  Ashamed of my worry, but worried all the same.  I should be positive…should be telling myself that the Megace worked and I am going to not only keep my uterus but kick cancer to the curb before he has a chance to even touch me.  But instead, worry has clouded my normally positive and upbeat outlook and drained my strength.  I’m scared.

I got a LOT of love today from so many amazing friends and relatives who sent well wishes for tomorrow and who are praying for and loving me.  From the very beginning, you guys have made all the difference.  I’ve come this far because of you, and I am so grateful to have each of you with me for this scary journey on a very winding and bumpy road.  A mere “thank you” seems wholly insufficient to express my gratitude.  Please just know that you’re loved and appreciated.  Thank you so very much.

Caution And Grace

Today was a good day.

Because I commute a significant distance to my office, I will generally take entire days off when medical appointments or other errands of short duration come up on my calendar.  Having had the entire day to myself was wonderful.  I was able to take my daughter to day camp, and watch her “in her element” as she happily started her day with her friends.  I had a few moments to myself at the house before heading off to the doctor.  Came home and indulged myself in what may (strong emphasis on the “may”) become a new hobby for me, cupcake baking/decorating (it’s a lot harder than it looks, hence the “may”).  Spent the afternoon with my daughter and working on a Girl Scout project, and later spent the evening with her and her Brownie sisters planning and practicing for their upcoming bridging to Junior Girl Scouts.  After a late dinner, my husband and I snuggled with her and read a book.  It was a good day and my heart is happy.

My appointment went well.  Very well.  I kept waiting and waiting for the pre-appointment panic.  The nervous, jittery worry never came.   (This is good, yes?  Maybe it means I am finally seeing all of this in its truest and most healthy light?  With caution and grace, each in its proper perspective?)  My doctor and her nurses were over the moon for me about my weight loss.  All three asked me in turn to tell them my story.  My doctor and I had a long discussion about shingles and she strongly encouraged me not to give up hope.  To be patient with my body as so many changes take place, seemingly all at once.  She promised me that the discomfort would be only temporary, and that the good that comes from changing my life is so unbelievably worth it (and I know she’s right…that’s what has kept me moving forward all these months).  After a quick exam (after which, she assured me that everything looked and felt fine), she told me that she wanted me to have another D&C later this month.  Because I don’t have any polyps, this one will be much easier.  Dilate the cervix, remove the cells, wake Jennifer up, send her home.  One, two, three, four.  We discussed next steps should the D&C show that the hyperplasia has subsided.  Being medicated for the rest of my life is one possibility.  A hysterectomy remains the other.  I’m not sure how I feel about this.  A hysterectomy is a significantly invasive and very risky procedure.  It’s expensive, both in money and in time (recovery can take six weeks or longer).  It permanently removes from me the ability to have more children by significantly changing the internal composition of my body.  As crazy as this may sound, I worry about the potential for emotional ramifications of the loss of my fertility.  Will I feel like “less than” or a defective woman?  Will it hurt when I see pregnant women and hear stories about new conceptions and baby showers?  Will the loss of my internal femininity change me?  Then the pendulum swings the other way.  By giving a pre-cancerous organ shelter inside me, how am I harming myself?  My body?  My life?  So many thoughts and so many questions.  Within an hour of my appointment, my surgery was scheduled for July 27th and plans for this second chapter of my journey were cemented.

I’m not scared…yet, anyway.  I’ve had and survived (very, very well, in fact) a D&C and will do so again.  I guess at this point, it’s back to the hurry-up-and-wait…and tiny baby steps forward in the hopes of getting good news.  I know I am right where I need to be at this point in my life, and that I am doing the right thing by following this course of treatment.  I guess I just hate the unknown.  It’s unnerving and scary and…empty.

The Forgotten Path

Hello Internet.

So, it’s been a little while since my last blog post.   So much for my goal to blog each day of my fortieth year, eh?  When I first had the idea to blog every day of “Jennifer, Year #40,” I had no idea about the big surprise life was about to throw at me – atypical complex endometrial hyperplasia – or the impact it would have on my life.  I experienced the entire gamut of emotions in a very short period of time…fear, guilt, shame, sadness, loss…and was so overwhelmingly blessed with love and support and prayers at each and every turn.  My family, my dear friends, colleagues…love to my left and love to my right.  As the days passed and time moved onward, I began almost to quietly, unconsciously even, divorce myself from the quiet storm taking place inside of me.  At my last doctor’s appointment, the decision was made to put me on medication for three months and look again in July to see if the storm had subsided or if the waters were still rocky and we needed to take more aggressive action.  July felt so far away, and with that break in time came a healing of sorts.  Maybe “healing” isn’t the right word.  Perhaps “quiet distance” is a better descriptor.  With the ball being in my court to take medication and focus on losing weight for three months, there were no appointments to worry about or struggle through.  Just space.  Peace.  Distance.  My forgotten path comes to an end tomorrow morning;  July is here.  The radar check to see if the quiet storm has gained any ground or lessened in its intensity is now within my sight.  All day long I knew I’d write tonight.  I’ve chronicled this entire journey, and this appointment is just as important as every other brick along this scary and sad road.  But I didn’t know what to say.  I didn’t even know how I was feeling.  After having felt so many powerful emotions, it feels almost empty to not feel anything tonight.  I’m sure I’ll see this in a different light tomorrow and some of that apprehension and worry will come back.  But right now, right in this moment, I don’t feel anything.  And I can’t tell if I should be grateful or scared.  Is this the peace of acceptance or the calm before the next storm?

So many things have happened to me, most of them amazing, since the last time we talked.  I promised you that I would be much more conscientious about the foods I was eating.  I took charge of my wildly out-of-control weight situation and began a change in my life that I hope will follow me for the rest of my days.  I signed up for My Fitness Pal, a free online program much like Facebook that utilizes social media in the support and encouragement of weight loss and fitness goals.  As you know, I gave up soda for Lent and I’ve not looked back since.  My 7-10 can a day habit has been replaced by bottle after bottle of cold water, supplemented by the occasional glass of milk or wine.  I power walk 20 minutes every day most days.  Since this entire journey began on my birthday last February, I’ve lost 49.6 pounds.  I see the change in my body in so many ways.  My face.  My waist.  My clothes.  My spirit.  Maybe it makes me vain, but hearing people tell me that I look great feels fantastic.  As I’ve done with this hyperplasia journey, I’ve also taken this fitness journey in the public eye as well.  All of my family and friends know.  My bosses and colleagues know.  Everyone on Facebook knows.  Intermingled with the congratulatory messages and phone calls and hugs are quieter, more meaningful sentiments.  People call me an “inspiration.”  Wow.  Me.  That one is somewhat hard to get my head around.  The more public I am, the less likely I am to fail.  I am so incredibly blessed to be loved by so many amazing people.  There is absolutely no way I can lose if they continue to stand behind me and cheer me on.  I know not everyone is like me.,.not everyone wants the world to see them struggle and see their challenges.  But I get so much of my energy from others.  And having had all of you last spring when we first found out that I was sick was a tremendous gift for which I will never be able to repay you.  So there’s a little less of me now.  I like it.  I feel better than I have in a very long time.

I got very sick two weeks ago, and I wish now in hindsight that I had blogged that entire experience.  It was…very interesting, let me just say.  I developed what I thought was a sty on the corner of my left eye away from my nose.  Styes generally resolve themselves, and I took only minimal home-care procedures in the hopes of speeding along my recovery (namely hot compresses).  Three days later, I felt odd sensations on my forehead….like an impending acne breakout, only much more painful.  The following day, I had bright red bumps on my forehead and my eye was swollen and incredibly sensitive to light.  A colleague who was once a nurse immediately sensed something was wrong, and recommended that I go immediately to my physician, who promptly diagnosed me with shingles.  Because my outbreak was so close to my eye, my doctor sent me to an eye specialist immediately, frighteningly telling me that if this should get in my eye, blindness was a very real possibility.  I credit both doctors with my recovery, which took about a week and a half.  The medications they gave me to slow the spread of the virus and control the pain made me very weak.  Walking a straight line was difficult.  As the illness progressed, my eye nearly swelled shut, and what little I could see was made painful by an almost blinding sensitivity to light.  My forehead felt like thousands of tiny little knives were stabbing me over and over and over again.  The bumps got redder and more…awful.  I compared myself to an ogre who had been beaten repeatedly.  That’s exactly what I looked like.  With the benefit of rest and good medication and a few days of quiet and solitude from the outside world, I got over the majority of the illness.  Small remnants of the bumps remain.  The stabbing pains are gone.  I’m left now with three potentially lifelong after-effects of my illness.  A small part of my face is somewhat paralyzed, although I feel tiny pricks of pain which a nurse-friend of mine assures me are caused by the reduced inflammation in my nerves.  I get occasional headaches behind my eye, which my doctor calls “Jennifer’s nerves trying to re-generate themselves.”  And I can’t cry.  Not without pain, anyway.  I saw a sad video on YouTube and just the formulation of a tear in my left eye caused me excruciating pain.  I’m a sensitive sort who enjoys the tearful movies and the emotional moments with the people she loves.  Crying is very much a part of the game plan.  Tears hurt a little less today.  As do the headaches.  Right now, we’re in a wait-and-see mode.  These after-effects could resolve themselves within six weeks to a year, or they could very well be permanent.  It’s scary and awful and with every ounce of me, I swear to you that I would never will this on my very worst enemy.  Shingles is so incredibly violent in its attack, and ruthless in its wake.  If you have had the chickenpox, be advised that you, too, can get shingles.  All it takes is a weakened immune system or, as in my case, a stressful week or two.  The virus lies dormant in your nerve endings and can be triggered without any warning.  No one knows why it happens or how it happens.  I leave you with the same words I’ve preached to anyone who would listen to me – if you suddenly feel unwell or have a painful or odd red mark on your body, go to the doctor right away.  Anti-viral medications are tremendously effective in slowing the spread and lessening the effect of shingles, but only if you begin taking them within the first 24-72 hours after getting sick. <End public service announcement>

So, that’s what’s news from my end of the cybersphere.  I hope that all is well with you.  Please send good energies and juju tomorrow morning for my appointment.  I’ll feel every good thought and wish….I promise.

2011 National Women’s Health Week: “It’s Your Time”

Hi everyone.  I know it’s been a while since I last posted.  All is well on my end of the planet, and I hope the same is true for you.  Easter and Mother’s Day were wonderful.  I’ve still not had any soda, although the days of Lent have long come and gone.  In all honesty, I just have no desire for soda any longer.  Drinking my calories does not appeal to me in the least.  Today, I am down 22.6 pounds and am working toward changing my life for the better.  Thanks so much to all of you for your encouragement and support – offline, on Facebook, on Twitter, in my EMAIL, etc. etc.  Having amazing people along for the ride (through all that has happened) has been such a comfort and a blessing.  I am ever grateful.

This week is National Women’s Health Week, and I thought it made for the perfect vehicle for me to return (yet again) to the Blogosphere.  In light of everything that has happened over these last few months, you might say that the topic of women’s health is somewhat important to me.  Health and life are precious.  There is absolutely no reason for failing to take the requisite steps to safeguard your health.  It’s the greatest gift you can give yourself…a gift that only you can give.

The theme of this year’s National Women’s Health Week is “It’s Your Time.”  What a fitting descriptor!  Now IS the time.  Each day that we live is a gift, one uncertain to continue and not promised to any of us.  Make a commitment to yourself and for yourself this week that you will pay closer attention to your health and well-being, and that you will actively make the necessary choices to safeguard your health.  The U.S. Department of Health and Human Services’ Office on Women’s Health encourages women to take steps to improve their physical and mental health and to lower their risks of certain diseases.  Those steps include:

  • Getting at least 2 hours and 30 minutes of moderate physical activity, 1 hour and 15 minutes of  vigorous activity, or a combination of both, each week.
  • Eating a nutritious diet.
  • Visiting a health care professional to receive regular checkups and preventative screenings.
  • Avoiding risky behaviors, such as smoking and not wearing a seatbelt.
  • Paying attention to mental health, including getting enough sleep and managing stress.

I encourage all of my female friends and blog readers to make the commitment to themselves this week to look more closely at their physical and mental well-being and to make any changes necessary for good health.  For all my male friends and readers, please share the above links with the women that you love and encourage and support them in their efforts to be healthy and well.

 

Peace

I love this time of the year.  Spring, the time of regeneration and growth and color and new life..and thunderstorms.  Amazing, refreshing thunderstorms.  As I type this to you, the Boston Terrorista and I are snuggled up on the couch in our formal living room.  The windows are open and the delicious sounds alternate between fat droplets of spring rain rapidly splashing against the pavement below and rumbly, energetic thunder.  The occasional flash of white-blue lightning pierces through our shutters.  Call me crazy, but stormy nights like these are unbelievably comforting and peaceful to me.  The air smells divine.  The rains nourish the earth and help it to prepare for new growth and the summer ahead.  The winds, cooling, as they usher in this amazing weather phenomenon.  I feel happier tonight and more at peace than I’ve been since the journey of the storm within me began on my birthday.

I saw the gynecologic oncologist today.  I was surprised at the overwhelming calm I felt in the hours before my appointment.  Given Tuesday’s panic and the many moments of sadness and fear in the days prior, I think I expected to be more nervous.  Sad.  Anxious.  My husband wrapped his arms around me and asked me how I was feeling, and I told him I was fine.  No apprehension.  No sadness.  The entire drive to the St. Luke’s Cancer Institute found me knitting trying to knit a scarf on my Knifty Knitter and laughing and happily chatting away with my husband.  Once inside the oncology clinic, I couldn’t believe my eyes.  This was like no other doctor’s office I’d ever seen.  Beautiful decor and furnishings, a gorgeous piano, artwork, a beautiful aquarium….books and games and literature filled the open spaces.  Flowers, colors, cancer affirmations…they were everywhere.  As I was completing my pre-appointment paperwork, a cancer survivor’s yoga class was preparing for another session.  Beautiful women in colorful scarves began trickling in for the class.  Seeing their smiles and the bright colors of their headcoverings made me both happy and sad.  Sad for their struggles, but illuminated, happy even, for their resilience in spite of obvious suffering and their bouncing back with laughter and hugs and yoga.  The men I shared the waiting room with, however, were obviously in the throes of active illness and it was unbelievably heartbreaking being in their presence.  One man spoke in such a gutteral, throaty voice.  I was certain throat cancer had claimed his ability to speak and breathe normally.  Another man with a throaty voice passed through on a reclined wheelchair.  Completely immobile, his cart buzzed by us as he thanked the nurse for helping him and assured her that he’d be seeing her again soon.  The most heart-wrenching of all was a very elderly man with a large bandage wrapped around his head.  His face was heartbreakingly disfigured and mis-shapen.  It was if half of his face stepped forward and left its remaining counterpart behind.  Maybe this makes me a terrible person, but I couldn’t stand to look at him.  It just broke my heart.  When his name was called to go back to see the doctor, he turned and walked the wrong way.  His wife had to remind him of the right direction and the purpose for his being in the office.  Absolutely heartbreaking.  And there my husband and I sat, no obvious signs of un-wellness.  No indication of any kind of illness.  More importantly, no conception whatsoever of the pain and suffering and humiliation and heartbreak of cancer.  Those people were brave and beautiful and for each of them, I felt so unbelievably heartbroken.  It was a clear illustration to me of just how good things are for me right now, and how foolishly I’ve been reacting to all of this.  I am sick, but I don’t have cancer.  And I have every reason to believe that I will come through this journey on the other side happy and healthier than I’ve ever been.

The gynecologic oncologist and her staff were amazing.  So, so funny and welcoming.  She was blunt and to the point, which I appreciated.  She reviewed my medical records and we discussed laparoscopic hysterectomy.  She explained that a robot (!!!) performs those procedures in their clinic, and that my size is a concern for her.  The robot, she explained, would have to be able to easily find my cervix on his (her?) own.  She also explained something that just took my breath away.  The medication I am taking, Megace, is the exact same medication she gives to her patients who are in the early phases of endometrial cancer!  In fact, she told me that Megace reverses early endometrial cancer!  I couldn’t believe it.  I thought to myself that if this amazing medication could actually reverse cancer, then of course it could reverse pre-cancer!  She examined me and she and my husband and I had a long conversation afterward.  She explained that she didn’t think I was a good candidate for the laparoscopic hysterectomy, but that she was easily able to find my uterus and feel my organs from the outside in, and she felt certain that she could perform an abdominal hysterectomy on me…if I wanted one.  At this point, she explained, the decision was completely mine.  We could do as my gynecologist initially planned for us to do – three months of the medication, a repeat D&C to see if the hyperplasia had subsided, and a hysterectomy if it hadn’t…or we could schedule a hysterectomy date today and begin preparing for surgery.  After a long conversation, I told her that if this drug is strong enough to reverse cancer in its early stages, then it’s absoloutely worth trying it for the three months and having another D&C.  At this point, I told her, a hysterectomy is too invasive and too risky a procedure, one which could potentially be unnecessary in the end.  She smiled and said that she agreed with me, and confirmed that if she were in my shoes (and knowing everything that she knows about medicine and cancer), she’d make the same choice.  After more laughter and shared stories (and an increased dosage of Megace was called in to my pharmacy), we left the clinic.  The overwhelming feeling I had was one of peace.  For the first time since this entire journey began, I felt at peace.  No more fear.  No necessity of intentionally diverting my thoughts to any other topic(s) I could find in an effort to head off the worried feelings.  Just peace.  The medication I am taking is used to reverse cancer, and it works.  A gynecologic oncologist thinks that I am doing the right thing and would follow this course of treatment were she the patient herself.  I am absolutely, 100% where I am supposed to be right now.  I feel comfort and peace…and like this is actually going to be OK.

I know this has been a long post.  Thanks for reading all of this.  One more thing before I go…I AM DOWN 14.5 POUNDS!  At my first gynecology appointment on my birthday, I weighed myself.  Between that appointment and last week’s surgical follow-up, I’d lost three pounds.  Since the only change I’d made to my diet was giving up all the soda, I was (and still am) convinced that those three pounds were lost along with all the sugar in those countless cans of soda I drank every day.  Today, I am down 11.5 more pounds!  HOLY MOLY!  Looking down at the scale, I was overjoyed and shocked and nearly cried!  So happy.  And proud of myself.  Can’t believe that I did it.  One step, one craving, one meal at a time.  Please pray for me that I’ll continue to have the stick-with-it-ness to keep at this.  And that the peace I feel now will last over these next three months.

Pendulum Swing

I’m really not doing a good job at this “blogging every day” thing, am I?  It’s been a relatively uneventful last few days.  Our monthly “Girls Night Out” was Friday, and I had a wonderful time laughing and cutting loose with my girlfriends (and a gay male friend, who’s really one of the girls deep down!)  It was wonderful watching our daughter’s team annihilate their soccer opponents last Saturday morning.  (I know that team sports are about sportsmanship and teamwork and learning the art and craft of the sport and being healthy, but let’s be honest.  It feels great to win.)  We went out to dinner as a family at one of my favorite restaurants to celebrate our tenth wedding anniversary.  I’ve been focusing only on the world around me and not the quiet storm inside my body.  I’ve been keeping busy, and the days seemed to go by quickly.  In all honesty, you’d never have known that I was sick by outward appearances, and I really wasn’t spending much of my energy focusing on what’s going on.  All of that came to a screeching halt this morning.

 I actually think it started yesterday.  Over the weekend, I did some research online in an effort to find some additional healing methods or approaches that I might use in conjunction with my hormone therapy for my atypical complex endometrial hyperplasia.  It was harder than I thought it would be.  I found one study that seemed to suggest that Vitamins C and E and beta carotene had been shown to have a strong deterring effect on uterine cancer.  I called my doctor’s office, and she confirmed it.  So I’m taking Vitamins C and E now and I’m off to GNC this afternoon in an effort to find beta carotene (finding pure beta carotene is harder than it looks.  No, Mr. Pharmacist, I don’t want Vitamin A with 20% beta carotene…I want 100% beta carotene!).  My doctor’s office also gave me the names of three local gynecologic oncologists, as promised, and suggested that I call and see who I can get in to see within a reasonable amount of time.  I think that all reinvigorated the worry and the panic.  You should have seen me at Walgreens last night, desperately comparing brands of vitamins and trying to understand all of the chemistry and IUs and dosages – blah, blah, blah).  When I got home, I felt a little blue, but spending the evening reading with my daughter and having dinner with my family helped.  I was so exhausted…I’m guessing from the worry and the sadness.  Both emotions hit me hard this morning around 5:00.  I just laid in my husband’s arms and cried.  Cried for the fear…the worry about this progressing to cancer…the very probable loss of my fertility…the guilt at this self-imposed condition and the stress it has caused the people I love…the fear of radiation and chemotherapy…all of it.  As always, my husband was amazing.  He reminded me of the good…and there’s a lot of it, let me add…and promised me that he’d be here to catch me when I fell and to celebrate with me when the clean bill of health was finally mine once again and for every step along the way.  I’ve walked around like a zombie all day, alternating between sadness and deep numbness.  Inability to concentrate made working on my audit near impossible.  I called the first oncologist on my list, only to be greeted (?) by an unbelievably rude office assistant.  She wouldn’t even discuss scheduling an appointment with me until she received my file from my doctor’s office.  (Hello?  Help me out, here.  Are we talkin’ next week or next August? I’m the patient here and could really benefit from your kindness and understanding as I’m hurting and worrying inside!)  She was abrasive and ugly and wouldn’t confirm that I’d see the oncologist my physician had selected, and snickered (I kid you not) when I raised concerns about insurance.  Just an ugly, ugly person…and a horrible reflection on someone who, I’m certain, is a wonderful physician.  Off to doctor-number-two on my list.  Her staff was much more friendly and welcoming, and I felt comfortable.  I had my records sent over, and I got a call back late this afternoon from Andrea, the very kind oncology nurse.  I’m in at 2:00 Thursday afternoon (that’s the-day-after-tomorrow Thursday!)  Can’t tell if that means I should panic (i.e., the oncologist looked at my records and, in sheer panic on my behalf, scheduled me right away) or if I should just shut up and be grateful that I got in as quickly as I did.  I felt the fog instantly begin to lift when I talked to Andrea.  I am grateful for this opportunity, and hope that this doctor can give us some good information.  One of the things she’s supposed to tell us is whether or not she thinks it’s a good idea to try for a laparoscopic hysterectomy.  If I have to have this surgery, and I’m convinced that I will, I’d so much rather go this route.  The procedure is significantly less invasive, and the healing time is so much faster.  Please cross your fingers for me that we get good news Thursday afternoon.

I still feel a little residual “ick” – not sure how long that’ll last.  I guess it was “just that time.”  I think it’s normal when you’re going through something like this, especially when inherent therein is a long period of “hurry up and wait” (three months is a l-o-n-g time), for there to be “up days” and “down days.”  Hoping for more of the former and less…much less…of the latter.  My doctor told me not to cry and worry.  Why is it so hard to shelve that worry and not allow it to manifest itself as tearful waterworks?

Dying Is Not An Option

Today is my tenth wedding anniversary.  I still can’t believe that ten years have gone by.  So many things have happened, mostly all wonderful, since that muggy Saturday afternoon in 2001 when Jennifer Gotshall married Curtis Smith at St. Matthew’s Catholic Church on Indianapolis’ northeast side.  Our colors were emerald and peach.  My Phi Mu little sister was my maid of honor.  Both of my parents walked me down the aisle.  Before the wedding, our amazing musicians rehearsed “Ave Maria” where my bridesmaids and I were being photographed, and it made me cry, forcing the musicians to find another practice spot.  My bridesmaids carried Longaberger baskets containing beautiful floral arrangements my mother had made.  I remember just seconds before showtime, sneaking a glimpse of my handsome husband-to-be through a crack in the door separating us and thinking to myself that I was the luckiest girl in the world.  Father Jack Emrich had us face our guests during the entire ceremony, and he stood with his back to them so that not one moment of our joy would be unshared with our loved ones.  We released our guests aisle by aisle after the ceremony, hugging and kissing our friends and family and thanking them for coming.  A few short months later, our daughter was born prematurely but healthy.  We moved a few years later and bought our own home.  We’ve transitioned jobs and have laughed through tears and have loved one another through each high and each low.  I am blessed to be Curtis Smith’s wife and to have his heart inside mine.  To him I wish a very happy anniversary and I send a tremendous feeling of gratitude.  Thank you…for laughter and love and strength and support.

I also had my surgical follow-up appointment today.  I came in armed with questions, all of which my amazing doctor answered.  She also did an examination to see how my cervix and uterus were healing.  She said everything looked good inside.  Well-healed cervix with no dialation.  Uterus feels good.  Then came the lengthy and scary hyperplasia conversation.  She explained what we knew already – that there are two treatments for atypical complex endometrial hyperplasia – hormone therapy and hysterectomy.  Because I have the “worst” (if you will) type of hyperplasia, a hysterectomy is the best possible treatment option for me. However, my weight makes me a non-ideal candidate.  The risk of bleeding and infection is greater in heavier patients.  So for now, her suggestion is that I take the Megace for three months, come back in early July, and then schedule a repeat D&C to see if the medication did as we’d hoped.  If not, the next step is a hysterectomy, no discussion.  She did also suggest that I consider seeing a gynecologic oncologist, not because I have cancer, but because he or she may think a laparoscopic hysterectomy might be feasible.  An abdominal one won’t work (my weight is the issue there, I guess), and I can’t have a vaginal hysterectomy because I’ve never given birth (my daughter was delivered via c-section).  So she’s going to have Sherry (her nurse) do some research and get back to me with the name of a gynecologic oncologist.  Here are the questions I asked:

Is this my fault?
I explained to her that I’m the sort of person who analyzes problems from the bottom-up.  I need to know why things happen.  I also jokingly threw in that I’m Catholic…I’m all about the blame and guilt.  (She’s Catholic too.  Thank God I didn’t offend her.)  I told her my theory….that obesity is one of the primary causes of polycystic ovary disease (PCO), and PCO is a significant cause of progesterone deficiency and that the lack of progesterone coupled with lots of estrogen is THE cause of hyerplasia.  She said that she has heavy patients who don’t have either PCO or hyperplasia…and thin patients who have one or the other or both.  It’s impossible to say what “caused” me to get sick.  Nothing is gained by ascribing blame anyway, she reminded me.  What is, is.  We’ll never know medically, but until the day I die, I will blame this condition on my weight (and, of course, myself for allowing my body to get so heavy and for neglecting my PCO for so many years).  This is the internal and awful battle I’ll face for a long, long time.  I cheapened myself and I am so disappointed in myself.

What else did the pathology report say?
Basically what we already knew – that I have atypical complex endometrial hyperplasia with squamous metaplasia.  I did have two polyps, but only one was on my cervix.  The other was inside my endometrium.  Both were benign.

Will my daughter get it too?
Not necessarily.  Hyperplasia isn’t genetic.

Did you get all of the endometrial tissue out during my D&C?
She thinks she did.  She removed as much tissue as she could see.

What is the exact, true percentage of cases of atypical complex endometrial hyperplasia becoming cancer?
I told her that I’d read so much online and that all of the doctors and studies said something different.  She said it was 29%.

What has happened to your patients with this disease?
She said that some have taken the hormone therapy and have been fine.  Others didn’t respond to the progesterone therapy and had hysterectomies.

Is it true that hyperplasia spontaneously regresses?
Yes, but in my case, it’s highly unlikely that it will.

What do you think about a low-glycemic diet?
One of my dear friends also has PCO, and her doctor recommended that she eat lower-sugar and good carbohydrate-laden foods.  I asked my doctor and she thinks this is an excellent diet.  She encouraged me, though, to find one that works best for me.

Lots more discussion.  Lots of support.  I asked her if by not having the hysterectomy, I was hurting myself by keeping a pre-cancerous organ inside my body.  She said yes, but also that the risk of surgical complications at this point is not worth it.  The risks are too great.  She also said that if she didn’t think the medication had a fighting chance, she wouldn’t have prescribed it.  We’d have moved forward with the hysterectomy.  I asked what she’d take in a hysterectomy, and she said just my uterus and cervix…the ovaries are still needed because my body needs estrogen, and it’s far too soon for me to be thrust in to menopause.  She was wonderful, just like she’s always been, and told me not to have any more weepy and worried nights (which I’ve had, by the way, every.single.night this week).  I’m to keep taking the Megace, call the gynecologic oncologist, come back in three months, and be strong.  I told her that dying was NOT an option for me, and she promised me that we’d do everything to get me to the point where I can live the rest of my life healthy and happy.

After my appointment, I just cried.  I told my husband that I felt numb.  Hollow.  I likened myself to one of those hollow chocolate Easter bunnies.  You bite in expecting decadent, rich chocolate or salty, creamy caramel only to encounter disappointing and empty air.  Nothing inside.  I drove around for hours after my husband went back to work, trying to put all of this in to perspective and let it all sink in.  That “numb” feeling I keep getting…I think I’m figuring it out.  My body doesn’t always know how to process sad or scary news, and additional time is required to analyze it all and make sense of it.  So to avert a complete meltdown (or, at the very least, an hours-long crying fit or two), I just go numb.  The drive helped, believe it or not.  So did conversations with my husband, mother, Sara, and my boss.  In the end, here’s where I am emotionally (right now, anyway):

1.  I DON’T HAVE CANCER!

2.  There is only a 29% chance that atypical complex endometrial hyperplasia progresses to cancer.  That means that there’s a 71% chance that IT WILL NOT!

3.  I’ve had and survived, quite well let me add, a D&C.  I can have another one.  It’s not pleasant, but I’ll be fine.  I’ve got documented proof.

4.  I am not less of a woman in the absence of a uterus and a cervix.  (You may have to remind me of this one a few times.)  I realize that internal organs are a part of genetically defining me as a female, but there’s much more to being a woman than tissue and cells.

5.  Losing weight is no longer optional.  It’s something I have to do.  If you figure, my next appointment isn’t until July 6th.  Basically, I just bought three months wherein I can lose weight and try to make a personal, non-medical impact on my well-being.  I’m not sure that I can quit carbohydrates cold turkey, but I will say this, I am going to be significantly more careful about what I eat.  I can’t afford to be heavy any longer.

6.  This is my fault.  I am in this situation because I allowed myself to get here.  However, it behooves me not to focus one more moment of my energy on that guilt.  It accomplishes absolutely nothing and will just make this situation worse.  I need to use that guilt and self-disappointment to make me work harder.

I’m not crying anymore.  The numbness is wearing off.  Acceptance is setting in.  I’m not saying I won’t have panic-filled, tearful moments again during these next three months.  But right now, at 3:51 in the afternoon, almost four hours after I got this news, I am OK.  Quietly so.  Even if it isn’t OK, it’s still OK.  It has to be.  Dying is not an option for me.  I choose to live.  And to do whatever I have to do to make that happen.