Sunday, September 23, 2018

Mantra (and angels) for ROUND 2!

New round - new song/mantra!  Thanks for sharing, Ruthie!!!!

If you're going through hell... Rodney Atkins

Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if ya kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do.

You step off the straight and narrow
And you don't know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie 
In a bottle of Jim Beam
And she lies to you
That's when you learn the truth.

If you're going through Hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there.

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right in the trap that they were laying, yeah.

But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back upon your feet
The one's that you been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying
If you're going through Hell
Keep on going don't slow down
If you're scared, don't show it
You might get out 
Before the devil even knows you're there.

If you're going through Hell
Keep on moving, face that fire
Walk right through it
You might get out 
Before the devil even knows you're there.             
 ~ Annie Tate/Dave Berg/Sam Tate

I am certain, I would never be able to face my fire, much less walk right through it, without my angels!!!  I am so grateful to all my dear ones who have sent sweet and encouraging messages, making your love and support felt even from miles away!  And then there are these:

Matching turtle socks to keep hope in sight!!!
Lovely hand made booties to keep me comfy!
Silly bugs to make me laugh!
Requisite potty pics!  This time with a new girl on the throne!
Still, excellent new versions of old fav's are the ultimate in potty photos!!!
Ziggy - to keep ALL our spirits up!!! totally get me...sweetness, that touches my very soul!
And, when Bentie is involved...there are pretty bouquets for me AND Ruthie!
Still - with all of that, I would NOT be here without my rescuers, my take me to the potty in the middle of the night with all my tubes team, my personal food pushers, best encouragers, ultimate nurses, skilled distractors, top researchers, sweet listeners, silly comedy team - my life support!
Much gratitude and appreciation to each and every one of you. I am so grateful that you were all willing to hold out a hand to pull me back on my feet. Bentie and Ruthie....I love you more than words can say.   Thanks to all of you, I'm gonna keep on moving, face that fire and walk right through it!!!!  Maybe I'll make it out before the devil even knows I'm there! ~ love, les

Wednesday, September 19, 2018

To all my dear MPIP peeps and ratties

I will never be able to fully express what your outpouring of support has meant to me over these past weeks.  You have all been a light in my darkness.  Your messages on the board, my blog and via email have warmed my soul, brought sweet tears, and made me laugh.  These are no small things!  I have also been enjoying a beautiful bouquet!  While I am unsure where to direct my thanks specifically, it has been a lovely treat.

MPIP is indeed a special place because of each of us!!  Yes, just as in families and the best communities, we each have our own special niche.  It often falls to Janner to help coax the newly diagnosed down from their perch with grace and patience, simultaneously walking them through their path report with skill.  I have seen many more of you stepping up here as well.  Yes, I have long been the resource for "data explained", researched "one more option" for my dear Stage IV peeps in need, and certainly pursued my various soap boxes over the years....

  • YES!  Immunotherapy works in the brain!!!!!!!!!!!!!!
  • YES!  People deserve anti-PD-1 even though ipi is available!
  • Adjuvant care is real and valuable and needed!!!
  • YES! YES!  YES!  Radiation and immunotherapy work better together and therefore can and SHOULD be administered together!
  • YES!!!  You can and SHOULD treat side effects of immunotherapy, even with steroids if needed.
  • Immunotherapy takes time.  Be patient with the patient.
You've heard them all!  Over and over and over!!!!  But, the good news is ~ I almost don't have to say them anymore!!!  In the beginning, when the world was new and there was no treatment for melanoma (anytime before 2011!!!!) and the years immediately following, it was a battle to get local oncs to provide access to the care we gradually had coming on line!  But thanks to all of you....we've come a long way baby!!!

As to researching help for those in need...there is no one who can find the right expert, talking about the right thing, at the right time and HOOK YOU UP!!!!..better than our dear Edster!  He may be only a mouse, but he is a keeper!!!  Eric W is a researcher extraordinaire and has become a force to be reckoned with in parsing trial exclusion criteria.  Partially due to their own travails, Brain P, Bill, Mat, Gary, and many others have become excellent advocates and experts at outside the box treatments...TIL, immunotherapy combo's...sharing what they've learned with skill.  I think we all need to work to make sure that intralesionals (like PV-10) are employed when they are an option, given the data and responses like those of Texmelanomex!!  (Yes, I know.  I'm still pushing!)

Mark_DC, Niki (Cancersnewnormal), Susan (Casagrayson), Sabklyn, and so many others give out thorough, intelligent caring advice daily.  Julie (Julie in SoCal) {Who has damn sure been through more than her fair share!!!!!} and Jenn (Jennunicorn) do the same with some good intell for those seeking adjuvant care.  We are truly blessed to have saints among us ~ Rob (Adriana Cooper) and Maria (maperny) ~ still here for us, holding us up in spite of their own great personal losses.  And while all voices and hugs come through the internet (Just like those t cells in the brain!!!!  I'm telling you!!!) some like those of Scooby and Melanomamike shoo the darkness from every corner!!!!

And, since there is no Camelot, we do need our deputies who keep our world productive and supportive.  Perhaps, because he is a mouse, The Edster can smell at rat at 20 paces!!!!  And while we love and admire ratties, folks here to cause strife, mislead, sell us "REAL LIVE COUNTERFEIT" - are not welcome.  Mike, Beth, NSNewf, and many others have proven their dedication in keeping this board a helpful, caring, and safe place.  You can bet that any number of our peeps will be ready to answer any newly arrived crackpot, touting, "When you imbibe only blue M&M's, taken three at a time, the third Wednesday of the month, just as the sun sets below a lone cloud...your melanoma will be gone!!!"  ...or any other sometimes more legit sounding shenanigans!!!  I mean to each his own, but we have to protect those still uninformed and desperate among us!  But, y'all don't need me to tell you that!!!

And that's the point isn't it?  Y'all got this!!!!  All of you I noted and the many, many, many other dear peeps I have not (though you are bright in my mind!!!!) ARE MPIP!!!!!  It is just that simple.  YOU are what makes the forum valuable in ever so many ways to ever so many peeps across the globe!! Keep up the good work.  It means more than you will ever know.  

This is not goodbye.  Lord knows, I could be in a rant on the board tomorrow!!!!  You all know I have never been one for secrets.  So, I wanted all of you who had interest to know that I have not dropped off the planet.  I will still be around.  You can always reach me via this board or my blog.  But, I have a long way to go...  And I'm not even sure where I am going.  That doesn't mean I won't get there!!!!  But, it might take me a minute.

You have no idea the kick it has given me to see "melanoma peeps" and "ratties" and "Melanoma sucks great big stinky green hairy wizard balls!!!!" become part of the vernacular!!!!!  I have loved every "Eeeeecccckkk, eeeeecccckkkkk. ", dear John!!!  It has been a rare privilege to be a trusted friend in each of your lives.  Much love always, les

And in case some of you aren't sure what it means to be part of this amazing family, here are just a couple of examples:

Saturday, September 15, 2018

Lordy, lordy, lordy!!!! What a bunch of gaum!!!!

Bout the time I finished my last post things started to take a turn....and not in a good way!  Like I last reported, the weird appendix do-dad was noted on scans on August 27. (No melanoma though!!!)  To surgeon's office on the 28th.  Figures we should do a simple little out-patient appendectomy on the 30th.  Well, that turned into a bunch of gaum!!!  (That's southern for a big gummed up mess!)  With adenocarcinoma ex-goblet cell carcinoid found in the appendix, there was the subsequent removal of 1/3 of the colon as well as the appendix and gallbladder.  Developed an ileus in hospital.  Finally got to go home on 9/9 around 7 pm, with the good news that at least the margins, rest of colon, gall bladder and lymph nodes were negative for ALL my cancers!!!  Up and down all that night pooping...not pleasant, but good, right???  Managed to get off my post.  But by around 3 pm on 9/10 things were not okay.  Poopage stopped.  Vomiting started.  By that evening we were sent back to the ER....NGT (GAGGGGGGGGG!!!!) placed to suction did provide some relief.  (At least they used some lidocaine and a smaller gauge this go round!!!!)  Scans showed bowel obstruction.  Next day another horrible process of a gastrografin enema (A special form of torture where radiopaque liquid is injected up your nether regions while x-rays are simultaneously taken.  Probably pretty awful no matter what, but with pain from surgery and an obstruction are already present...OMG!!!  "Could you lay flat and then roll to your side mam????"  Luckily a super sweet and amazing radiology tech got me through it!!!)  On the good side, there were no other tumors in evidence in the colon.  Then it was off to surgery ----AGAIN!!!  However, the surgeon talked to us about going ahead and removing the ovaries, since he was going back in, as that is a place this cancer likes to seed, if things didn't get too complicated.  We were fine with that as Brent had already learned that in his reading and we were going to request it be done if possible.

Got that done and have been trying to recuperate since.  Got an epidural put in this go round since narcotics make me throw up and anti-emetics give me extra-pyramidal symptoms!  Also have a foley, IV and wound drain.   You know?  The usual!!!  I am actually feeling a bit better.  Will hopefully start losing tubes today with the goal of going home Monday.  On a positive (NEGATIVE!!!!  HA! Cancer humor!!!!) note, my ovaries were negative for all my cancers.  There is pain.  But mostly I am very weak.  Arms and legs think they are on vacation.  Guess that's what happens when you have zero nutrition for 17 days!!!!  Started clear liquids last we'll see what happens!

I appreciate so much all my dear sweet peeps from melanoma world, work, life and family, who have reached out with their kind messages, warm wishes, and tangible help.  It has meant more to me and mine that you will ever know.
The love and sweetness of many will lead me out of the darkness.
Much love, les

Monday, September 10, 2018

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

Good Grief.  So, I had my "annual" neck, chest, abdomen, and pelvis CT's with MRI of the brain and lab work on Monday, 8/27.  It went way too easy.  No fighting with Blue Cross Blue Shield.  No problems, other than the most ridiculously surly, know nothing, lab tech evah and an icky hair in my late breakfast....   But, we'll pause there for a minute to note this:

Link to my last update:  9/2/2017 - 14 years in Melanoma World... 

Here's the new me:

180 months (15 YEARS!!!!) post my original melanoma diagnosis in 2003 at the age of 39
100 months Stage IV (more than 8 years!!!)
94 months NED (well....for melanoma at least)
92 months after starting nivo (Opdivo)
62 months (more than 4 years) AFTER my last nivo infusion in June 2013.

Sounds pretty damn super fantastically fabulous, no??  But, while driving home from my scans, per my last post ~ Live chaotically!!! - Refashion - #2 - and a buried lead from weird, wacky, melanoma world!!!!  ~ I got a call from my local oncologist telling me crazy mess about my appendix.  So...

I saw my surgeon 8/28 ~ cause everybody has oncs and surgeons with whom they have long and varied histories in their life, right??? ~ I mean, I'm really lucky I do, but still!  He wasn't too alarmed by the CT report, but given my history felt the appendix should come out.  Simple lappy appy.  How hard can that be?  And because he is awesome and didn't want things to wait too long, as we have (had) a long dreamed of, planned out, and saved for - trip to Italy that starts 9/23, he scheduled the surgery for Thursday (8/30). 

About an hour into what should have been a short, outpatient procedure, B gets a visit from the surgeon and pathologist.  Poor, sweetie.  Turns out, I have a path in my pocket, too.  Same dear soul that had to break it to Brent that the path report on my sentinel lymph node back in 2003 WAS in fact, melanoma, despite the fact that his partner had said it was negative.  The tie was broken by Mihm at Harvard and Ox was right.  What a dear man ~ to tell his friend, B, the truth, even when it contradicts his peer and is the last thing his friend wants to hear.  Well, don't say lightening can't strike twice, at least if you're Ox!  He's out in an chamber off the surgery waiting room, along with the surgeon, telling B that the 10.5 cm mass in my appendix is not melanoma, rather it is a rarer than rare adenocarcinoma ex-goblet cell carcinoid.  Whatever the hell that is???!!!!  But, they needed B to decide what to do.  Close me up?  Take out the ascending colon including the ileocecal valve (the valve that keeps the poo in your large intestine [colon] from flowing back into your small intestine - seems like I need that!!!!) as that is the "standard surgery" for this sucky cancer that nobody knows much about????  And, the gall bladder looks really bad and should probably come out, especially since, if this other surgery is done, removing it later will be difficult with subsequent scar tissue etc., etc.???  What to do?  I know that had to be very hard for B to answer.  But, knowing I'm a get-her-done kind of girl...he gave the go ahead for all of the above.

Gotta say, that was a hell of an epiphany to wake up to, which, sleuth that I am, quickly deduced on my own in the recovery room when I finally managed to peel open an eyeball, get some focus in it, find a clock, and determine that my little appy had gone more than 4 hours.  Shit!  I gained some confirmation by my post op nurse who didn't wanna talk about it!!!

I know that so many of my melanoma peeps have probably been through far more gruesome things, but I will say that the past 12 days have been a nightmare of putrescence, pain and horror.  If there was something that could go badly, it did. Incredibly bad reaction with dyskinesia (horrible jerking movements you can't control...happening most when trying to sleep) to phenergan and zofran (meds to keep you from vomiting)?  Check. Vomiting horrible green slime anyway?  Check.  Developing an ileus (where at least one part of the intestine won't wake up and function)?  Check.  NG tube to suction?  OMG!!  Check.  Ileus not improving so surgeon worried about small bowel obstruction, leading to repeated X-rays and then a CT scan before which the contrast had to be injected via the NGT, into a stomach that did not want it?  Check.  Heparin injections?  Not that big a deal, right.  Well, usually they are given in the abdomen, but not when you've had abdominal surgery.  So, to quote a nurse, "We'll just use your thighs since that is an unaffected part of your body."  Wrong.  Having a zillion hard as marbles granulomas throughout my upper thighs, secondary to the peptide vaccines I was given in my trial, turned even that into a bit of a disaster.  I was in hospital only 3 days (having been told I could spend weeks in ICU) when the right upper lobe of my lung was removed!!  This mess turned into an 11 day hospital stay, having just gotten home last night. About 6 sleepless days/nights in, B called in the troops.  My sweet dear Ruthie came up and they took turns doing night shift. I don't know what we would have done without her.  She and B had it down to a science.  IV here.  D/C NG from suction there.  Pull her to the bathroom.  Pillows here and here.  B would rub my back as I pooped foulness.  Despite 30 years of the closest marriage two people can have and despite the poor man having held my vomiting head more times than can be counted...pee and poop was not a shared ta-dah.  Til now.  Ruth gave my trembling stinky ass baths when she could...literally saving my life and sanity.  The kids and dear Don came up to try to entertain and provide support.  Melanoma peeps and dear ones everywhere have sent dear sweet messages of care and love.  Cancer really kicks everyone who cares remotely about you - straight in the teeth.  I am lucky to have such amazing folks in my life.  But it breaks my heart to not only feel their hurt, but be the cause of all their suffering.

On the good side, there was no melanoma in my bits and bobs.  As far as my adenocarcinoma ex-goblet cell carcinoid, there were clear margins and all nodes were negative.  On the down side apart from its existence period, the cells were multiplying rapidly and my type is one of the most aggressive for "seeding" to the abdomen among the small number of tumor types in this category of crap.  The surgeon reports that the abdominal surface looked fine as best as he could tell by the naked eye - which is good.  There may (or may not) be scans that try to determine a clearer answer to that.  There is much that we do not know. Dear Ox did a ton of research for us.  My donkey is well on his way.  There may be a specialist we will see in Nashville at Vanderbilt.  We will be talking to the Wizard Weber and see if he has any wisdom or advice.  Not exactly his bailiwick.

I am sad.  Stripped.  Broken.  We are not going to Italy.  I cannot lift my bags and hop on and off the trains we were planning to take up and down Tuscany - from Rome, to Siena, to Cinque Terre, to Florence and back to Rome as we had planned.  I cannot hike from Vernazza to Riomaggiore to Corniglia as we planned.  There will be no sweeping views with my baby.  No Sistine Chapel.  No Apian Way.  No cacio e pepe.  No holding hands and smiling at each other in the chaos of a foreign city.

On an ironic note, I have been working out with Rose for months.  Running better than ever.  Had the narcissistic thought to take an ab selfie a week or so ago as I had abs that Channing would have been (fairly) proud of.  While today the best I can tell you is I have lost 10 pounds, but look as though I am 6 months pregnant.  My abs, however, are certainly ripped.

People have asked, "Would it have been better to be melanoma?"  An incredibly strange and horrifying question we had already been asking ourselves.  I have no idea what my answer is.  I have no idea what my answer is to anything. Except, this really, really sucks.  I don't know if I can go through this shit again.

Thanks for all the love.  I will try to become me again - someday. ~ love, les

Wednesday, August 29, 2018

Live chaotically!!! - Refashion - #2 - and a buried lead from weird, wacky, melanoma world!!!!

In the (lately) ongoing series of posts that are the height of crunchy, artiness combined with the mother of invention (necessity) and a bit of elbow grease (often icky effort) there is this ~ Need something to hold your music now that you're gonna revive your piano skills???
Well, you have this slightly moldered and faded basket (now cleaned and left in the sun for a couple of days)!!!
Apply some stain.  Let dry.  Rub (repeatedly) with a clean dry cloth when it doesn't "dry"!!!!
And there she be!!!  Quiet, unassuming, utilitarian.  But pretty and useful just the same!
Have an asparagus fern outgrowing its previous situation?  Got an old stool?  This one was from a local yard sale.  Failed to get a pic of the original. But, a couple of coats of blue paint and you are set!!!
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

Monday, August 27, 2018

Sew (and live) Chaotically! - Danita, an Inari, and love

I believe in soul mates.  They are not always lovers.  They are not always blood relatives.  But they are real.  People who get you - from the start. Who have your best interest at heart.  Who share - the good, the bad, and the ugly.  Who listen to the same from you.  Who know you - warts and all. 

I have had the incredible blessing to have more than my fair share of these wonderful souls in my world.  And my dear Danita is certainly one.  We clicked from the moment we met.  We have cried together and laughed so hard that tears ran down!  She is a soul sister indeed.  When she admired my Inari Tee  dress, I wanted to make a special one for her!  So...I did!!!

The Inari I made for myself (link above) had a bit more structure.  But I thought this super soft brushed cotton woven from JoAnns would be perfect for D!!!
I think it works!!  Isn't she the cutest?????
And in case my happy place wasn't happy enough.....
....she and her talented husband made me this!!!!
Exactly.  Your spirit is forever in my heart, my dear sweet Danita.  Thanks for being you.  My life is ever so much better for having you in it.  Much love, c

Sunday, August 26, 2018

Live chaotically!!! - To my B

Only in my crazy, wonderful world with B does every bit of this make perfect sense!!!

Happy anniversary, baby!!!  30 years!  Not nearly enough.  Summer linen peeps toes!!!????  Still cracking me up.  My crazy boy.  My true love.  Because you got me.  Because you were the best.  Because you were beyond kind and true.  Because - you were you.  And, I was right.  I love you more.  ~ les