Updates, With 11 Days Left

A lot has happened in the past few weeks!  For one, we’ve completely moved into the new house.  And by that, I mean that all our belongings are under the same roof but almost nothing is actually unpacked or put away.  When I was healthy, I could get a home unpacked in a week easily with time to spare for a drink or two.  But that was before.

We also went to Scottsdale, AZ, for a few days to soak in some warm sunshine.  Husband’s folks have a house out there, and they flew us out for a little R & R for Spring Break.  It was a blast!  We went to the OdySea Aquarium, the Butterfly Wonderland, and had lunch at DockTails, a little bistro on the patio of the Dolphinaris pool (dining with dolphins was every bit as heavenly as it sounds!).  I’ll post some fun pictures at the end of this entry.

Unfortunately, chronic illnesses don’t often take vacations even when you’re lucky enough to escape to a place as beautiful as Scottsdale.  I knew my stamina would be just as limited as it is at home, so I made the strategic decision to cram EVERYTHING we wanted to do into ONE DAY.  It was our first full day there and we started with the aquarium, which lasted about three hours.  It was a gorgeous new facility and I was impressed that they were able to get everything into one building like that (being in the PNW, our aquariums are mostly open habitat).  I’d been powering through my pain and nausea and utilizing every method I knew to “be present.”  My boys’ delighted eyes fueled each step and strengthened my resolve.  I even had my husband fooled that I was feeling okay, which is quite a feat!  That guy sees right through me, I swear.

But during the last exhibit, when we sat in a theater that rotated like a carousel to highlight their star attractions: sharks, seals/sea lions, and the rays, I crumbled.  I was grateful for the darkness and took the opportunity to give my “brave face” a break.  While my family ooh-ed and aah-ed, I tucked my knees to my chest and cradled my stomach with a ridiculously misplaced grin on my face, since I learned that smiling really big suppresses the gag reflex.  When the lights came back on, I dropped my knees (slowly, to curb the ripping sensation in my abdomen) and adjusted my oversized grin to my well-practiced, natural looking grin.  No one was the wiser.

After the theater, the linear layout of the aquarium leads you through the gift shop to get to the exit (clever, huh?), and of course since Grandma was there the boys got to pick out some overpriced trinkets.  A wave of pain and nausea overcame me, and I had to bury my face in my husband’s chest at the back of the store to hide my tears.  Obviously he was very concerned and he even begged me to go home and rest, but I didn’t want my disease to rob me of these memories with my children.  I took a moment to gather myself before continuing on, and was thankfully able to hold it together through the rest of our day.  I powered through for another three hours after that.

I paid for that one day for the remaining four of our trip, and had to be heavily medicated almost constantly to keep the pain at a manageable level.  But hey, if you’re going to be in excruciating pain and/or higher than a kite, reading a book poolside and watching your children play (with other adults around, of course!) isn’t a bad way to go.  Silver linings, am I right? heh heh.

Now that we’re home, I have nothing to do but lay in bed and dwell on things (whether I like to or not).  The bending and twisting that comes with unpacking is too much for me anymore.  Heck, even bathing my children lays me out for the rest of the day.  Suffice it to say that my life being slowly sucked away from me.  I really can’t do much these days.  And without the move or the vacation to distract me, I’ve fallen into a pretty dark headspace.

For those that don’t know, my husband, Alex (may as well start using his name now) was married before.  Kathy was 25 when she passed away from cervical cancer, just a year after their wedding.  They were actually on their honeymoon when she started bleeding, and every moment after that was the two of them fighting for her life.  You can learn more about her story here, if you’re so inclined.

Now Alex has another sick wife to take care of, and with many of the same symptoms and limitations.  And while nothing about my case indicates malignancy, we’ve seen those rare cases fleshed out and there’s no denying that it’s on our “what if?” list.  It doesn’t help that I learned in a seminar that the only difference between what I have and cancer is that the DNA in the nucleus hasn’t mutated.  Just like cancer, these rogue cells of mine form their own blood supply, they replicate at an accelerated rate, and can metastasize to any part of my body. In some cases, it’s gotten to the lungs, brain, or liver where complications have caused fatalities.  I don’t for a moment believe I’m in that category, but we won’t know exactly how far it’s spread until after surgery, and the composition of the tissue will be revealed with pathology report.

At the very least, it’s bringing Alex a lot of post-traumatic stress in the form of painful memories and terrible dreams.  And since I’m naturally a stubborn, self-sufficient fighter who doesn’t want to burden others with taking care of me, I’ve been bottling things up to protect Alex.  This isn’t healthy for either of us, so we have to carefully and deliberately communicate (and sometimes over-communicate) so that we can keep working through things together instead of retreating to our separate quarters emotionally.

In the meantime, I’m being tortured in my own body and there’s not much anyone can do to help me until surgery.  My days are spent with gritted teeth and white knuckles while I hide the pain as much as I can from my boys.  Every pill I take is preceded with the question of whether or not the side effects are worth it.  Often I go without, because tummy troubles (to put it lightly) or being knocked out while watching the children are not realistic options.  Fortunately our puppy, Finnley, is quite intuitive and must know I’m unwell, because she’s really mellowed and treats me with a new gentleness.  She’s been laying on me since I returned from vacation, as though her love and cuddles will cure me.  Our cat, Carrots (the boys named her), has been equally affectionate.  I’m grateful for the extra comfort from these two.

Tomorrow is my pre-op appointment and my pre-surgery physical (two separate appointments, I guess?) so I’m sure I’ll have more to share after that.  For now, you can find me in bed.

I’m hanging in there.

 

A few pictures from our trip:

Tiny getting ready for his first flight!

backyard views

LUNCH. WITH. DOLPHINS.

the Wildlings on a walk with Grandma and Grandpa

Little eating a sucker with a CRICKET in it!! Gross!

Mutiny

The Adenomyosis Creed:

“This is my heating pad!  There are many like it but this one is mine!  My heating pad is my best friend!  It is my life!  I will know the length of its cord, the temperature of its settings, and master them to serve me best!  Without my heating pad, I am useless!”

I thought you might enjoy that silly little twist on the Rifleman’s Creed!  Seriously though, it completely describes my life lately.  With the pain coming more frequently and lasting longer, I’ve not been able to put my heating pad down.  It brings me sweet, sweet relief for the low price of one burnt stomach and being tethered to an electrical outlet.  I’m going to have to invest in one of those portable ones that you can microwave or something.

My mutinous uterus has been stealing away more and more of my life lately.  For example, today was Husband’s birthday and we had plans for a tasty little brunch at our favorite bistro.  Instead I stayed in bed with Old Faithful (my heating pad) while he and Tiny enjoyed some croissants with brie and strawberry jam.  They brought me home a delicious breakfast of poached eggs over roasted tomatoes and aoli.  It was divine going down, but much less so coming back up.

The vomiting is new.  I’m finding that it comes when the pain is the worst, along with migraines and full body sweats.  I keep having to change my sheets for drenching them.  And possible TMI alert:  I’m starting to get intense abdominal pain when my bladder is full as well as when I empty it.  And the pain is getting severe enough that I feel it when I sleep and dream, as well as to wake me up frequently throughout the night.  I swear, there is no relief!  At least until I’m officially diagnosed with something Kaiser deems worthy of something a bit stronger than Naproxen.

I think if I was fighting any other enemy, I could bear down and power through like I have in the past.  I can square up and go toe-to-toe with just about anything that comes my way.   But because it is my own body causing me pain, I feel an immense sense of betrayal.  My body is supposed to be “one with me” or whatever.  It’s never felt more like a vessel separate from me though.

For now I remain in Limbo, counting down the days to the surgery that will determine if I have only one disease that will be cured with the hysterectomy, or two diseases, with one being a debilitating, incurable condition that will plague me until I reach menopause (and possibly beyond).  Evidence is mounting for the latter, unfortunately.  But I’m trying hard to keep my head in the present and not spend my limited energy spinning around in the what-ifs.  Emotionally I’m doing okay, but I think things will come to a head as the hysterectomy nears.  Part of it might be that I have the pending move to distract me.

Anyway, this was just a little glimpse into a day in the life of someone with a chronic pain. I’ll write more in a bit.

 

Keep shining,

-Rachel

LIMITS

I mentioned before that we have a lab puppy.  Finnley is six months old and is the most adorable beast of destruction I’ve ever laid eyes on.  She is a handful now but there are some strong indications that she will be a snuggle bug throughout her life and that she’ll be as sweet as sugar as she ages and mellows.

The poor thing has been having a difficult time being cooped up inside and Husband has been asking me to please help her run off some of her energy while he’s at work.  The trouble is that I’m just so damned tired.  I do not have the energy to shower some days let alone take the puppy out and throw the ball around.  I hate it.

But I pushed myself today.  I laced up my pretty peach and lavender Nikes that I’ve not been able to put to proper use since getting them, grabbed the ChuckIt, and took the pooch out during a sun break.  The trouble is that the lawn was absolutely saturated, and not long after taking her out she turned from a beautiful champagne color to a sloppy black/brown.  The damage was already done, so I wore her out properly before bringing her in for a much needed bath.

After all the bending, lifting, twisting, contorting, and olympic gymnastics that comes with showering with a labrador puppy, I quickly nose-dived from a semi-decent day to a really really really painful one in a matter of minutes.  It felt as though one of those Rock ‘Em Sock ‘Em Robots used my gut as a punching bag, accentuated by knife-like twinges in random areas in my abdomen.  The evidence is mounting that I might have endometriosis in addition to the adenomyosis.

Endometriosis is exponentially more terrible than adenomyosis, and right now it is also one of my greatest fears.  Like adenomyosis, endometriosis is when the endometrial tissue (lining of the uterus) goes all rogue and decides it would rather not live by the conventional rules of staying where it’s bleeping supposed to stay. Endometriosis is when the tissue escapes the uterus altogether and starts to creep throughout the abdominal cavity, invading neighboring organs. It is cannot be stopped, it cannot be cured, and all that can be done for the patient is to manage the symptoms.  I’m not ready to go much deeper than that right now, because I’m trying to keep my mind only on the things I know for certain.

With each day that passes the this disease takes a little bit more of my life away from me, whether that’s through fatigue, being medicated, or being in too much pain to pick up my children.  That last one is particularly heart-wrenching, since I’m used to sweeping my children up in a big ol’ bear hug on a whim.  They love it, I love it, and it is something I wanted to do until they decided they were too old to want it anymore.

This wasn’t a planned blog entry, honestly.  I had a few other things I wanted to cover in the coming days.  I’ll cover more at another time when I have the emotional stamina to do so, but being in pain drains me a bit and I’m just not in the best head space to go there right now.

But for the sake of truth and transparency, I felt it important to share what a typical day looks like and how limiting the disease can be.  It’s just so stupid that something as seemingly little as bathing a freaking dog would cause me to be bedridden for the rest of the evening, and I know that I’ll still be paying for it tomorrow.  It’s important to me that if other women are dealing with these symptoms that they SPEAK UP!!  It shouldn’t take 10 years to get diagnosed like it did for me.  I don’t think I mentioned this before:  when my gyn mentioned adenomyosis, she left it at that.  It was like she was thinking out loud to herself and I overheard her by accident.  She didn’t explain what that disease was, how she should investigate it further, NOTHING.  I went home and did my own research on what the hell she was talking about, and learned that *sometimes* it can show up on an MRI (though you could still have it and not find it on any imaging).  I emailed my doctor to show her what I learned on my own, and told her I needed an MRI.  I was the one who found my own disease.  If I had known that what I was experiencing already had a name, I would have been diagnosed and put under proper care years ago.  But because it was found late, I have to deal with a major surgery to remove an organ from my body, leave me infertile, and put me into early menopause.

Please please please be relentlessly diligent when it comes to your health!  I cannot count how many times they told me to go home and take some Tylenol, or how many times I was asked to acknowledge there was a chance that it was all in my head.  FIVE doctors. TEN years.  If you know something is wrong do some research.  Once you have some possible explanations, look at what methods are needed to confirm or rule them out and share that with your physician. I was the only one to save me.

 

Keep shining,

Rachel

hysterectomy blues

 

Our boys, age six and two, are affectionately nicknamed the “wildlings.”  For privacy’s sake, let’s call the eldest Little and the youngest Tiny.  Little is bold, outgoing, affectionate, charming, and a bit of a clown.  He has a knack for being the ringleader among his peers, and I have a feeling he’s going to make our home the “hangout house” in his teen years.  Tiny is an adventurous little explorer who loves anything with wheels and will only give snuggles if it was his idea first (this makes his hugs extra special!).  Investigating how things work is a favorite hobby of his, and he loves to pal around with our lab puppy.  Both boys are handsome beyond words and use their big beautiful eyes to manipulate Mom and Grandma into doing their bidding.  They could probably take over the world with their good looks alone, honestly.

Generally when I tell people that I have two boys, the next thing out of their mouth is “Are you going to try for a girl?”  This question has always been a bit odd to me, as though it was implying that my family was somehow incomplete without a daughter.  Adding to the pressure (that I put on myself), Husband always dreamed of having a daughter, as did his mother who ended up with two sons and two grandsons.  I wouldn’t have minded having a daughter either – someone to take to dance classes, get pedicures with, etc.  Plus, it would have been nice to have a bit more estrogen in the house to balance out the overwhelming testosterone.  Husband and I have our hands quite full already and we probably would not have ended up having a third baby, but there was something a bit comforting knowing that we had a few years left to make up our minds.

Being diagnosed with adenomyosis has taken that choice away from us though.  You see, even if I’d opted out of the hysterectomy that would cure the disease, my uterus would be too rigid to stretch adequately as the baby grew inside me, and that’s if an egg would be able to implant properly at this point.  I’ve felt quite blue knowing that I’ll never feel another baby kick again, or that I’ll never be able to rest my lips against the sweet-smelling forehead of a new little life that I brought to the world.  I’ll miss the tiny onesies, the itty bitty toes, the swaddling blankets, and the wonder of holding something so small.

Today, I gave away the remaining baby goodies (crib, high chair, a rocker, and a bunch of other items)  that we’d been hanging onto “just in case.”  It was bittersweet letting go of the things that once cradled my babies.  I’m happy they went to someone who really needed them, and in an odd way it will be a bit of a relief not having those things in the attic as a constant reminder of what could have been.

I’m sure I’m not the only one to feel this way when told that they need a hysterectomy or that they have a disease that would leave them infertile.  It is not lost on me how blessed I am to have had my two sweet boys already – I know that I am more fortunate than most in my position.  The wildlings help me cope, too, by letting me hug them a little tighter, hold their hands a little longer, and Little is always up for extra snuggles (Tiny is far too busy for such things, thank you very much).  Getting through this will just take a little time I suppose.

But if I could leave you with one action item, please consider not asking people about their children unless they bring it up first.  You never know if the childless couple who’s been married for years or the mother of two boys is battling infertility.

 

And so it begins…

Here we are, I’m starting another blog.  The others were failed attempts at rambled journaling, but since I’ve been asked to keep people posted as I creep along the path set before me this is where we find ourselves.  Let’s start with the light stuff!  “Peachy Little Lemon” is a play on the sometimes sarcastic remark given when people ask how you’re doing (just peachy!), and the idea of a flawed body being called a “lemon.”  Conveniently, there are cute little emojis that fit perfectly: 🍑💝🍋!!  Beyond that, I am going to have to undergo a change in diet to put myself in the best shape I can be for my recovery, so the cheerful fruits will cast a happy light on something that can sometimes be a bit daunting. Aaannddd…peachy-pink is one of my favorite colors! 🤗

I don’t promise to be bubbly throughout this process or “handle it with grace” (what does that even mean, anyway?).  I do promise, however, to be honest and raw and vulnerable about my experience trudging through this mess.  My goal is to reach other women and let them know they are not alone, as well as realize the importance of being their own healthcare advocate when they recognize that something isn’t quite right with their body.  This is probably a good time to give fair warning that I’m going to use big scary words like “menstruation” and “uterus” (😱😱😱), so if the academic nomenclature makes you a bit squeamish, read no further!

Ten years ago I developed a sporadic pattern of intense pain during my monthly cycle.  Some of the bouts were intense enough to merit a trip to the emergency room, but nothing would ever come of it.  I’d be referred back to my gynecologist who would order a pelvic ultrasound, and they always came back clear.  The well-meaning doctors just told me I had rough periods.  The ignorant doctors would suggest that perhaps I had a digestive malady, and others (usually male) dared ask me if I was sure it was my uterus/ovaries that were causing my debilitating pain.  I was tempted to kick them in the testicles and ask them how it felt – ha!  After a few rounds on this rollercoaster, I began to doubt myself:  Was it all in my head?  Did everyone else hurt this badly and I was just too weak to handle it?  Eventually I decided to suffer in silence.

The persistent, painful spells began to come more frequently starting about a year and a half or so ago.  I racked up another few thousand dollars in medical bills on fruitless rounds of tests while the mounting pain began to interrupt my daily life.  The pain lasted longer, spread over a greater portion of my body, and grew in intensity.  I became irritable with those close to me while silently gritting my teeth through my agony.  New symptoms popped up like migraines, sleepless nights, and weight gain among other messier things.

Because we had to switch medical insurance, I saw a new physician who (mercifully) took me seriously.  When my physical exam was limited due to the amount of discomfort I was in, my doctor hypothesized that I could have a condition called adenomyosis.  A few weeks later, the diagnosis was finally confirmed with an MRI.  🙌🏼 Hallelujah! 🙌🏼

For the uninitiated, adenomyosis is the condition in which the endometrium (inner lining of the uterus) encroaches on the myometrium (muscular layer of the uterus itself).  Each individual pocket of rogue tissue is called an adenomyoma.  These adenomyomas thicken and bleed like regular uterine tissue, however the blood becomes trapped within the muscle layer since it cannot exit the body through a normal menstrual flow.  ✨Hint: this is PAINFUL!! Imagine Chuck Norris in heavy combat boots roundhouse kicking you in the uterus!  I have diffuse adenomyosis, meaning that the disease afflicts my whole uterus rather than being focused in one particular area. Because the only cure for this is disease is a hysterectomy, my husband and I decided it was the obvious choice.  My surgery is scheduled for April and I am looking forward to the relief it should bring me.

There’s a lot more that I’ll cover, but for tonight I only have enough energy to go over the background of it all.  The next time I post, I’ll cover the tidal wave of emotions this has brought me.  For now, I’m going to snuggle in for the night.

Be well! 💕