Saturday, April 6, 2019

Sew Chaotically! ~ Bruges by Orageuse - 7 months in the making - and an update

On August 26, 2018 I celebrated 30 years of marriage to my best friend!  On August 27 I had annual scans to follow up on my Stage IV melanoma.  If clear, they were to be my LAST per the Wizard Weber!!!!  You have no idea how weirdly fabulous it feels to consider that option unless you have spent years (16 for me) in the twilight zone that is an ongoing cancer diagnosis!!! But driving home from the scan, everything changed ~ again.  That is the crazy "normal"composed of boulders, treacherous ravines, mountains, and great big piles of shoo shoo that sit right in the middle of the roads we cancer peeps navigate.  On August 28 I posted this pic on my insta account...

On August 29, I wrote this: Live chaotically!!! ~ Refashion #2 ~ and a buried lead from weird, wacky, melanoma world!!!!  which reads, in part:

In the refashioning of me ~ I've been out of work in Greenland for two weeks!!!  There was a to-do list!  You would not believe the stuff that's been accomplished around here!!!  I was so excited that it had only two more items left to complete before an amazing Italian vacay...leaving several weeks of reading, music and sewing!!!!  Well, when you live in weird, wacky, melanoma world, you never know what might happen next.

Monday, I had my now ANNUAL brain MRI and CT's of neck, chest, abdomen and pelvis.  I didn't even have to go ballistic on some A$$hole at BCBS!!!  All studies were approved with no talk of, "These studies are not needed due to your history of 'skin disease'!"  Three sticks and one sluggish lab tech later - while driving home after a late breakfast that included a large hair, unlike mine,  laying across the potatoes that accompanied a bacon, egg and avocado sandwich from First Watch, I got a call from my local oncologist.  "Hello!  Oh my goodness!!  Ummmm.  I mean, your scans were fine and your brain was fine in regard to melanoma, but you have an acute appendix."  I'm like, "No, I don't.  I don't even have a stomach ache (and that's saying something after a lot of contrast medium and the late breakfast I just had!!), much less a fever, vomiting, diarrhea...".  "No, really", she replied.  "I'm calling the surgeon now."

So, yesterday....I saw the surgeon.  The same dear one who set things straight years ago after a botched job with my initial primary in 2003 and dealt with my next melanoma crazy in 2007.  Now, just so you understand the wacky world that is melanoma follow-up, ditzelville as B calls it, after all the scans that I have had for the past 15 years, I now know that I have:
1.  Sparkly nodules in my thyroid.
2.  A shit ton of gall stones.
3.  A hole in the back of my head that no one can explain.  You can choose sequelae from a really bad fall down the stairs vs a brain met that resolved before it was noted.
4.  A uterine fibroid.
5.  Along with a few other bits and bobs that wax and wane over time.
BECAUSE....when you get scans....while looking for things that may do you harm, you inadvertently find doo-dads that may be important or just red herrings, that - if you lived in a normal world - you would never deal with at all, since you were not having any problems that warranted investigation!!!

Lots of folks in melanoma world freak the F@CK out when they get news of such things!  (Hell, lots of folks with nothing wrong with them or their lives stay in FREAK out mode!!!)  I've been here a long time.  And, I'm weird.  I don't freak out.  It's not fun to work through these things.  But, freaking out requires energy that I don't possess.  So, when Dr. Weber freaked out about my gall stones when I developed rectal bleeding and diarrhea - I had them evaluated.  They were fine and so was I.  In that vein - today I saw the surgeon.

He noticed the gall stones.  With no problems, didn't want to touch 'em with a ten foot pole.  The appendix, well....  Probably should come out.  It's bigger than on prior scans.  Probably a mucocele.  Often caused by 'nothing'.  Sometimes related to another icky, though less aggressive cancer.  And with my history, possibly related to melanoma...though...still...unlikely.  So, appendectomy scheduled for Thursday.  What the heck?!?  I'm between jobs and countries.  Let's get her done!  Refashion.  It's a thing.  I'm gonna miss you my dear little mucoid appendix!  Planning on some quality time together tomorrow!!! - c

Well!!!  If you've been hanging around here for a bit, you know things didn't go as planned for the NEW PLAN!  I was incarcerated for a while and it wasn't pretty!!!

9/10 - How to move seamlessly (?) from one deadly disease to another - or - What the F@CK?????????

9/15 - Lordy, lordy, lordy!!!! What a bunch of gaum!!!!

9/23 - Mantra (and angels) for ROUND 2!

The story ~ 9/25 - Tales from the Crypt ~ Part 1 INCARCERATION HOSPITALIZATION ~

9/26 - Tales from the Crypt ~ Part 2 INCARCERATION HOSPITALIZATION RECIDIVISM (The tendency of the convicted criminal to re-offend.) ~  

9/27 - Tales from the Crypt ~ Part 3 PUNISHMENT, cruel and unusual ~

9/28 - Tales from the Crypt ~ Part 4 Putting Humpty Dumpty together again ~

9/30 - Tales from the Crypt??? Nah! That's not right! Tales from REHAB - Part 1!

10/4 - REHAB - Part 2 What the heck do we do now???

10/6 - REHAB - Part 3 Nourishment for the body, and even more for the soul.

A three month regimen of CAPOX, a combination of oxaliplatin IV and capecitibine orally, followed creating its own special crazy.  But, back to my insta pic!!!  7 months, multiple nightmares and two surgeries ago I started these PANTS!!!!!  Pants that were blue and awesome.  Pants that were to be the basic component of my Italian vacation wardrobe.  Pants that I had fallen in love with when perusing all the lovely patterns by Orageuse!!! Fun fact:  When you lose over 15 pounds but your belly swells as though you are 6 months pregnant, it is NOT the time to make ANYTHING with a waist band.  Hell, it is not the time to WEAR anything with a waist band, much less your beloved Burges!!!

It has been a crazy ride to say the least. Still, when I went for my oncology recheck this week after my first set of scans to follow my "new" ex-goblet cell adenocarcinoma of the appendix (GCC) Stage II and "old" diagnosis of melanoma Stage IV, I wore the best suit of armor ever:
Orageuse's Bruges and Butterick's 5616 Jean Jacket Extraordinaire!
Yep!!! Scans were clear.  Lab work looked okay.  We are in process of double checking my folate and B 12 levels, due to the length of gut removed, and following some tumor markers that are likely to be fine given the clear scan.  The plan is to follow them every 3 months with some regimen of routine scans and of course additional ones should the markers become elevated.  I am doing pretty well.  I am getting stronger.  I run or do the elliptical with core work at least 5 days a week.  The soles of my feet still burn and the tips of my fingers remain a bit numb due to the neuropathies the CAPOX caused.  Hopefully, they will gradually resolve.  Hair loss has stopped and the weird plaques and rashes are fading.  My most difficult problems of late have been arthralgias to hips and knees.  I think the CAPOX re-flared the crap I dealt with while I was on nivo (Opdivo), but that's just me.  Those symptoms dissipated over time, so I am hopeful these will as well.  Since finishing CAPOX in January, I have had three episodes of extreme bloating and abdominal pain.  We are trying to determine if they were caused by inflammation/colitis the CAPOX triggered or an anatomic problem related to the bowel surgeries.  The first episode was the worst, with each successive event less so.  I have fingers crossed that they were residual flares caused by the CAPOX and will cease!!!  At any rate, should it happen again, I will go in and have a film done in real time to see if we can better determine what is going on, as the scans I just had showed no stricture or obstruction, which is good, but I was not having a problem at the time. SO ~ there you go!

NOW!  These PANTS!!!  I love them.  I made a 40, but took in the back seam and both back darts about 1/4 inch each, with an additional 1/4 inch taken off both sides at the waist.  The waist band is awesome as it is curved already, so no mods were needed there.  You can add the stripe at the leg seam or not, as you wish.  I already have plans for another pair!
Yes, I am standing in the sewing notion aisle at Michaels.  We were there FOREVER waiting for a frame!!  But, we made good use of our time!!!
It is strange.  I feel that some of my clothes are contaminated.  Ruined by use during miserable, nasty times (ergo the need for new lounge/sleepwear) or from one too many trips to Tampa for bug juice, scans or hours in treatment units.  At other times, clothing becomes your protection.  Your armor to preserve and shield, to keep you standing while the world around you crumbles.  Sew!  I shall proceed with my planned Italian wardrobe.  And while the pieces will not see Italy anytime soon, if ever ~ I think they will carry me far.  Live, love, travel and sew - chaotically!  Much love, les


  1. I love your thoughts about the psychology of clothing and am glad you are doing better/well.

  2. Thanks, sweetie!! We do what we gotta do, right???