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 5 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 a 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


  1. Oh, there you are - and sounding like you! Even though you don’t feel like Bubbles-you yet. This is so wong and unfair (hearing my father’s voice, eyes wide, “Did I? Did I ever promise life was fair?). I hate it for you, makes me cry, but you will go to Italy. And maybe thank goodness for melanoma scans? {hugs}

  2. Bless you and Brent. You are the greatest fighter and Brent is the greatest captain who will leave no stone unturned as he fights by your side. You've got this friend. It's just been a shocking, overwhelming, difficult recovery kinda of 12days.
    I HATE cancer or that cancer bitch we call her.

    1. I dont know why its says unknown but it was my post

  3. You can and you will because you are you . . . my hero!!!! My best to the donkey. Love you.

  4. Oh my gosh, I am so very sorry. I check your blog daily and wondered how your appendix surgery went. As Mike said, maybe the melanoma saved your life. Wouldn't that be something! You are here and Tuscany is waiting for the day you feel better. You are one tough cookie! Sending love and best wishes for strength and health~

  5. I am heartbroken to hear about the latest in your journey. How horrible. You are a light in our Melanoma darkness. I will keep you in prayer. Hugs to you and your family. God bless you and fill you with His peace.

  6. Dear Celeste, We are so sorry to hear all the crap you're going through. Having been through something similar only makes me think I understand a little of your distress. It just sucks. However, after wanting to die, I did manage to dig out of the black hole with a lot of help, and I am confident you will be able (finally) to do the same. Love to you and Brent, Jonathan and Francoise

  7. Update for my sister:

    The past week and a half has been hell on Cess. But we were hoping that her much desired return home would allow her the rest needed to allow her to begin to recuperate. She was taking it slow with introducing food back into her system, despite Brent and I being food pushers as she is painfully thin now. Turns out this was a wise move. As soon as more solid foods were incorporated into her diet yesterday, she began to experience even more pain – along with a return of vomiting. She and Brent ended up in the emergency room and she was admitted last night. The doctors again suspect some sort of obstruction, although many tests have been done already in an effort to rule this out. There will be more unpleasant tests this morning – probably occurring as I type this. Surgery is planned for 4:00 pm today. As they are opening her up again anyway, they plan to go ahead and take the ovaries – as this is a common site of the seeding that she mentioned above.

    Yes, she is a trooper, maintains a positive outlook as much as possible, and always hopes for the best. But this has been a hard blow and being a fighter didn’t prevent it from happening, nor will it make it go away. She is just worn out and devastated by this new cancer. Brent has been amazing as usual – always by her side and already striving to know everything possible about adenocarcinoma ex-goblet cell carcinoid. I am, as ever, so grateful for his presence in her life. I would like to thank all of you as well, your support means so much.

  8. I forgot to mention... They once again inserted a nasogastric tube -- one of the worst things you can do to a person in my opinion. :(

  9. Dear Celeste, You have been such a blessing to the melanoma community. You are always there with support and answers. We will be there with you as much as we can be over the interwebz dots and digits. Susan

  10. I came home today and immediately checked the forum, hoping to read that Celeste was doing better at home, and am in tears over this ruthless setback. It’s hard to put into words how much she gives to the melanoma community, and what she’s given to me personally and my husband (he’s the patient), including fun visiting about peach trees and music and more. I know life doesn’t come with a fairness guarantee, but this is as wrong and unfair as it gets. Thank goodness she has you, Brent and Ruth, and thank you so much for the updates. May she slowly but surely get better.
    Beth in VA

  11. Hi Celeste, sorry you are going through all this -- worse than I could have imagined. I was hoping you would be home now and recovering. On the positive side, am hoping that removing the obstruction will also help remove any seeding so that in the long run this will actually be better. I just hope so. You know how grateful i am to you for your help and positivity, as are many many others on MPIP. You are an amazing example. I just hope this goes well, you will take it easy and take time to recover, then eventually you will be back to where you were. Mark from DC

  12. Dear Celeste,

    We are pulling for you, dear woman, with all our hearts and thoughts. We know this is all totally awful, naso-gastric tubes and all the other insults known to medical science. It's all running a terrible gauntlet, but you can come out the other end successfully, if anyone can.
    Jonathan and Françoise

  13. I am beyond sad to learn that you are going through more pain, suffering, and sadness. This is terrible news. I simply cannot imagine how it must feel to face a second form of cancer after fighting the first for 15 years. I hope you can endure this trial and find your way back to being healthy and happy. Love, Kik

  14. Please let us know how she is doing when you can.

  15. Hi Ruth, my thoughts are with you, Brent and of course Celeste, anybody who can go through this and keep positive is amazing, and your sister is amazing, she is an inspiration and friend to the world of MPIP, we all owe her so much, I'm confident that she will fight this with everything she's got and the support of us all. Keep smiling, GeoTony

  16. This is Tammy a friend of sweet Celeste. Just want to give you an update from what I heard last.
    She had her surgery Tues. They found and removed a small bowel obstruction along with her ovaries. The ovaries were removed as a precaution because the cancer likes to hide there. There were no signs of cancer. Still waiting on path report. She was given an epidural to help with pain and that allowed her to rest. ( unsure if she still has it). This am she was able to get rid of her NGT. I'm sure that was a relief. It has been a rough 2 weeks for our friend. Prayers she can now regain her strength and have an easier time recovering.

  17. Thank you so much for the update. We were really anxious to hear any news. Love, Françoise and Jonathan

  18. Thanks for the update, Tammy. Celeste is such a light in the dark, and her passion, smarts, and heart have buoyed me and so many others. Sending love and wishes for a healthy recovery.

  19. Thank you too. I think and pray for Celeste every day. Hoping for good path report and then hope recovery goes well. Celeste has helped me and so many others - am always grateful.

  20. Just reading this. Celeste, the one thing you’ve clearly expressed you don’t have time for is fear. I’m shocked to hear all this. When in the midst of my own cancer I constantly heard “I just wish you didn’t have to go through all this”. I didn’t know what to do with it. I feel it now from the bottom of my hopefully perfectly healthy appendix. I’m not one for the latest surge of superhero movies. I actually detest the movement. But You’ve been my hero all these incredibly new and foreign years and that you’ve been suffering has put tears in my eyes and right down my cheeks. I’m crying them for your dear kids too. Though I know you and B have brought up some Incredibles that don’t kind choppy waves once in awhile. There will be no seeding. Just running, and family, and Italy when this is all through. Oh, and love. For gods sake get better right now

  21. Marilyn Smith September 27, 2018-7:52 PM EST
    Dear Celeste,
    After reading all that you recently went through, which no one in the world could even imagine in their wildest nightmares-you wrote and email back to me to help me. You are one of the bravest, most talented caring people I have ever had the privilege to see. If anyone deserves good health, peace and continued love from everyone in the world, it is you. Thank you for being you Celeste. (And I love your craft projects too).