Updates, With 11 Days Left

IMG_2737A 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.

IMG_2732In 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:

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Tiny getting ready for his first flight!

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backyard views

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LUNCH. WITH. DOLPHINS.

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the Wildlings on a walk with Grandma and Grandpa

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

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