Sunday, September 30, 2018

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

Thanks in large part to all of the love and encouragement that has been sent my way from all of you, I am beginning to see some light!!!!  I have been eating quite well.  Ruthie set me on a great path and B has been taking good care of me in that department!  Plus, we have been working together on some meals out of Chrissy Teigen's two cookbooks, just for fun.

This cod with miso butter was really delish.  We made ours with squash because B was worried about too much fiber in the snap peas just now.
Another supper out of the book was this amazing cheesy polenta (with mozzarella, cream, AND Parmesan, guys!!!) topped with a perfectly fried egg by Bentie, along side sauteed mushrooms  and spinach!  Soooo yummy!!
I keep forgetting to take pics of my amazing Bentie breakfasts.  I am too greedy and just eat them up!!  There has been plenty of kefir or yogurt with fruit, lots of eggs all sorts of ways, and are these little pancakes not the cutest??  Tasty too!!!  I'm taking my multivitamin and iron supplement every morning.  Other positive news I forgot to include in my last report ~ though my hemoglobin was 8.1 at hospital discharge it had already increased to 9.3 at my oncology visit Wednesday.
I have been blessed by good visits with the kiddo's.  (Which included meatloaf and mashed potatoes when Fred-o was here and chicken salad sandwiches when Roo came by!!!)  I know this has been a rather traumatic slap in the face for them.  Yet, they have been consistently strong and cheering for me - rather than the other way round.  We have had good talks about everything...politics, me, as well as the good and the difficult in their own lives.  That may not sound that significant.  But, as one who has been in tenuous health positions before, I've found that lots of people fear being "real" around the "victim".  I am thankful that they are comfortable in sharing their lives with me, period.  But, even more grateful that they continue to do so in our current circumstance.  I am so proud of both of them.  They are strong, generous, hard working adults, who are doing their best to make their way in a world that is not always kind or rational.

Yesterday, B tamped down his own worries and fears and helped me putter about the yard!  My entire family, for years, have said,  "There she goes!  Cleaning the woods again!"  Well.  Maybe.  But, I have spent 20 years turning this plot of wooded land into a garden.  Having been abandoned for a month, which included a good deal of rain and storms, there was certainly cleaning to be done.  B, has often said HIS yard would consist of gravel spray painted green, but works tirelessly to help me effect any yard work I so desire just the same.  So yesterday, I walked slowly and carefully about - pointing out sticks and limbs to be collected, tomato vines to be taken down, cages to be stored.  Small steps...but steps nonetheless.

Sweet Ruthie came fully ready to provide not only cheer and sustenance during her visit, but "activities" as well!!  (We like our "activities"!!!)  We watched the first season of Big Little Lies together.  Man!  Those peeps and their crazy will definitely take your mind off your troubles!!  And, she came set to help me embark on a project she has heard me go on and on about!  Making pillows with cases covered with Sashiko embroidery for my couch!!!

She finished hers, on the right, and it looks awesome!!!  Mine is a basket weave pattern on the left, that looks like shite!!!  But, I'll get her done and see how she looks in the end.  I think I should claim I was on major drugs during the process, but y'all already know that ain't so!!!  HA!
During this grand convalescence I have also managed to complete a Pediatric Primary Care module, required annual continuing education credits for my pediatric NP certification and license, take the test, and make 100%!!!!  Guess, I came out of this with no greater brain damage than I already possessed!!

And finally, though B has promised to help me get situated and hopefully do a bit of sewing today, when a sewist ain't sewing, she can be studying up on it via her laptop, right????  And this is the awesomeness I've come up with!!!!

I am quite excited about this little dress hacked by The Fabric Store using the In the Folds, Ruffle Sleeve Top - a free download from the Peppermint Magazine!!!  I think it will be perfect for a little piece of Liberty cotton that I have from my Paris fabric shopping!!!
Here's the link so you can see it for yourself:  The Fabric Store Blog ~ Ruffle sleeve dress pattern hack
I'm in LOVE with this Llira dress by Pauline Alice!!  B has already ordered the PDF for me and has promised to work his magic soon!!!
I was much tempted by this Faura top/dress, also by Pauline Alice...
...but when I saw this Honeycomb Shirt/Dress by Cocowawa Patterns, I knew it was perfect for me!!!
I think it will work better on my less curvy frame.
I just love the little collar and the detail on the long sleeved version!  And yes, Bentie is on it!!!!
I still have a long way to go.  It feels really strange not to have exercised in a month.  It goes against my grain to move so slowly, to have to ask for and accept help, for stupid things!!  Perhaps these road blocks I keep hitting is Mother Nature's way of teaching me grace, humility, and patience???  Okay, B!#CH!  I got it!!  Enough, already!!!

In case you were wondering - my answer remains unchanged.  I do NOT feel I have become a better person for having had cancer - TWICE!  I am NOT AT ALL thankful to have been attacked in this way!  I am seriously pissed!  For myself, and even more so for the hell that my dear ones keep having to endure on my behalf.  Still, I am forever grateful to all of you who have blessed me with your love and kindnesses ~ to "keep ever burning before my vagrant steps - the kindly light of hope".  Much love, les

Friday, September 28, 2018

Tales from the Crypt ~ Part 4

Putting Humpty Dumpty together again ~

When in Rome/Home!! - Years ago, I visited Bath, England, about a hundred miles from London, where in the 1st century AD, Romans utilized the naturally occurring hot springs to create an amazing spa and bath surrounded by a lovely city.  After driving oak pilings into the mud, stone chambers were built, in which lead lined pools were created so that the warm waters could flow into them and be contained.  Beneath the floor, furnaces were used to heat the chambers, including the walls, using chimneys and pipes to circulate the heat, preventing the flames from touching the walls or floors directly.  Folks usually began their process by sitting in warm humid rooms, scraping the softened dirt and debris from their skin with curved a metal instrument called a strigil - moving to the most heated pools, followed by cooler ones as they sought cleanliness and comfort.  All this to say, that I, like the Romans, am in serious need of a long soak and scraping with a strigil!  However, a shower makes a world of difference.  It is a slow and laborious process to wash my hair and make a first pass at cleansing my neglected body.  Oral care alone, despite brushing my teeth repeatedly, daily in hospital, is not easily maintained with forced mouth breathing due to an NGT.  I make a first pass at all things and feel much better.

Poopage - Diarrhea continues about every 2 hours.  However, over the next couple of days it slows.  I am thankful, but extremely paranoid.  The last time this business slowed, things did not go well!  B comforts me, telling me I am repaired.  Things are supposed to slow, as my gut in general deals with the re-introduction of food and my remaining colon learns to remove additional water from the debris to make up for the portion that was removed.  Bowel function gets better slowly.  A full week after discharge, I am finally NOT pooping throughout the night and something resembling normal stools are finally evident.  BEYOND TMI!!!!  Yes?  I have always been a bit perplexed at the attention some folks place on their poops and those of their children.  Perhaps this has been my punishment.  At any rate, I am thankful for something heading in the direction of normalcy.

Starvation leaves a mark - 19 days with inadequate nutrition have taken their toll.  My skin actually hurts...from pokes, prods, and nutritional deficits.  The soles of my feet and fingertips burn.  I look like a 6 month pregnant, plucked chicken whose ass is a bag of flap jacks hanging about my knees. I continue to have a great deal of swelling to my thighs and abdomen.  The muscles I worked so hard to build up over the past year have evaporated. Saggy baggy boniness is all that remains.  My skin peels pretty much in its entirety.  Weird.  Still each day gets better.  I can now stand and walk without trembling.  B has started me on an iron supplement and a daily multivitamin.

My food pushers - Ruthie returns once we are home with the most well planned and thoughtful menu for a post abdominal surgery convalescent that could be imagined!  She is a wonder!  She arrived with meals prepped and all ingredients in hand!  (As well as 'activities'!!!)  B prepares yogurt with fruit along with a variety of eggs and toast for breakfasts.  Ruthie is in charge of lunch and supper, starting with the most amazing chicken avgolemono soup!!  Such lemony goodness!  She, and it, get full marks for starting me on the road to recovery!!!  There was a roasted pepper soup containing all sorts of pureed vegetable goodness.  Egg salad.  Creamed tuna and rice.  Split pea soup with carrots and ham.  My food pushers have settled on a soft but high protein, high calorie diet to try to build up my strength and weight which is down 10 pounds and probably much more when you account for the retained fluid.  But, my appetite is coming back!  I eat small meals at least 5 times daily.  B jumps to fix me anything I express interest in.  Now, a week and a half out, he finally admits that I am actually eating well!!!

Pain - I've always wanted a "pain-o-meter".  How much pain is one experiencing?  How much pain is typical for 'x'?  I don't even know how to judge it for myself, much less others.  Ironically, I have been sent home with major drugs for relatively simple dental procedures, though they went predominately unused.  After this fiasco, I have been taking only Advil and Tylenol.  I am doing okay.  Initially, lots of positions or movements were quite painful.  It gets better daily.  I try to breathe deeply and stand straight, as the tenderness below my ribs makes me tend to crouch to protect the area.  I am finally able to turn over in bed somewhat normally, rather than having to stand and start over.  I have yet to be able to sleep more than 2 hours at a time as I get too uncomfortable and must get up to re-position.  By 5 or 6 am, I am back in the recliner so as to rest in a different position.  It's okay.  I get sounder sleep as the days go by.  Surely, this too shall pass.

Now what??? - I saw my surgeon Tuesday.  He removed my staples and felt that things were healing well.  When I asked how he recommended I proceed to gain my strength, he said, "Don't go start running just now!  But, do a little more than you think you can each day."  Brent looks rather stricken, "John, c'mon, man!  Give me a little help here!!!"  I will recheck once more with him in a couple of weeks.  The following day we see my local oncologist.  To review:  my ovaries, the portion of colon removed, gall bladder, and all lymph nodes were negative for both melanoma and my newly discovered adenocarcinoma ex-goblet cell carcinoid.  To visual examination, my surgeon reports no evidence of seeding.  All very good news.  Still, I did have a 10.5 cm mass in my appendix albeit with clear margins and without it having penetrated the serosa (the thin plastic wrap like layer that covers the outside of our intestines).  Making me, as best we understand, Stage 2a.  Conversely, at a cellular level, the cancer is one of the most aggressive for its type, with most folks who have it already Stage IV at diagnosis.  It is hard to know what to think about that.  You could assume that folks with my cancer are very likely to progress due to its aggressive nature.  However, because most folks with this cancer are asymptomatic (Just like me!!!  Perfectly fine!  No pain.  No problems!!!) until extreme abdominal spread has already occurred, making itself known with pain and other symptoms that send them to the doctor, where they are found to be in a very bad place at the very start.  So...  What to do?  No one is sure.  B has reviewed every paper published on my carcinoid type since the 80's.  The numbers of peeps are small.  Folks like me, even fewer.  The options for someone in my position, Stage 2a, rendered NED, are:
1.  Watch and wait.  With some sort of scannage, frequency and type yet to be determined.
2.  The doc with some expertise in this cancer at Vanderbilt is treating some folks with FOLFIRI or FOLFOX.  In his current treatment group there are only 2 like me and they are doing well.  BUT.  Are they doing well, because they would be doing well no matter?  Or, are the doing well because of the treatment?  What are FOLFOX and FOLFIRI?  I use my time with the NP at my oncology visit to learn about them.  Her face and answers makes it clear that the regimen is harsh.  They are basic old school shit chemo used for gastric cancers. FOLFIRI = calcium folinate, 5-fluorouracil, and irinotecan.  FOLFOX = folinic acid, dluorouracil, and oxaliplatin.  Both can cause nausea, diarrhea, neutropenia, fatigue, stomatitis.  FOLFOX is a little better tolerated than FOLFIRI. A port is placed.  A pump, which you wear in a "fanny pack" is attached and administers the med over the next 24 hours (I think. B thinks 48 hours.) every 2 weeks, for 6 months.  So you go in to have the pump attached and return at the appropriate time to have it removed.  Plenty of poor souls survive this daily.  Bless 'em.  But, DAMN!!  I don't want to have to go through that!  The thought of 6 months of nausea and diarrhea are rather horrifying just now.  More importantly, I need to try to figure out, somehow, if going through the misery of completing this nightmare, would even do me any good!!!  On a positive note, if I do participate in this treatment option, I can have it done locally.  These are old drugs.  They are FDA approved.  My local onc is very familiar with their administration so I would not have to be going back and forth to Nashville for them.
3.  Finally, in an ironic twist, docs are also doing some work in treating this type of carcinoid with anti-PD-1 (the med I took for melanoma) and anti-PD-L1!!! Apparently, many carcinoids test positive for these proteins/ligands.  So, B is going to have pathology look at my tumor for those - as well as other targeted/genetic mutations.
4.  There are some biomarkers that can be followed to determine status, so we will be looking into those as well.
5.  We have told Dr. Weber of my condition.  He responded kindly, but as expected had little to offer other than a name of an onc in California.  Whom we may or may not touch base with.  He seems to deal with gastric cancer generally, rather than my type of carcinoid specifically.  We will be seeing the specialist in Nashville next week on October 3.  One other note about this cancer.  It does NOT tend to metastasize to brain and lung and such the way melanoma can.  Rather, it tends to stick to the abdomen and those surrounding organs.  Whatever that is worth...

All the king's horses and all my sweet friends - While  Humpty Dumpty did not fare very well despite the help of all the king's horses and all the king's men, I am putting my pieces steadily back together in light of all the care, concern and tangible help I have received from my friends and dear ones.  I cannot begin to express how much the outpouring of your love and support have meant to me and mine.  It is real.  It is essential.  It gives me strength and hope.  Much love and thanks to each and every one of you.  I will work hard to become strong again, I promise.  Love, c

Thursday, September 27, 2018

Tales from the Crypt ~ Part 3

PUNISHMENT, cruel and unusual ~

Discussion (?) - Morning breaks.  My surgeon arrives. Yep, small bowel obstruction.  Surgical repair required.  And, since we're going back in, should probably take out the ovaries.  (B and I had already planned to request this.  How f'd up is that???? As, apparently, this is a locale my nasty new cancer likes to seed.)  We agree.  "One other thing," he says.  "I think we should do a gastrografin enema as well."  I'm confused.  Why?  What will this tell us about my obstruction?  "Nothing.  I just want to make sure there's no other cancer in the colon."  F@ck.  The thought - of that.  Shit.  The process - of the test.  Okay.  "Okay.  I'll schedule it.  We'll plan for surgery at 4."

Enema - After a day of fluids, NG drainage, and waiting....around 3 in the afternoon, another of the consistently caring, human transporter team arrives to take me to the ENEMA!!!  I should explain.  I will be placed on a table under an x-ray machine.  While there, a tube will be put in my rectum and gastrografin (a liquid that will show up and outline my parts on x-ray) will be injected while my abdomen, specifically my colon, is filmed at the same time.  B and I are parked with the same sweet chocolate brown lady, alongside the other pitiful waiting misfit toys.  I dread my fate.  Suddenly, the sweet tech of the slidey table fame, is kneeling by my wheelchair. Unlike most patients, I know what is coming.  But, thankfully she takes the time to explain every step of the process to me before I even go back to the x-ray department.  Thank you, kind lady.  People deserve and need that!  We are off.  She helps me get into position on the table.  Behind me, she talks me through each step.  Then, things go a bit off the rail.  I am to turn.  Not easy for me period just now, especially with something up my derriere, pain from my earlier surgery, an IV, and a tube down my nose.  With the increased pressure from the fluid, there is increased pain.  She tries to help me.  Suddenly, the tube is dislodged.  Fluid is flowing rapidly everywhere - up my vaginal area, all over my bottom and stomach, including my incision.  I try to yell to let them know.  Finally, I am heard.  The flow is staunched.  The tube is awkwardly replaced.  We begin again.  In certain positions, I can see the radiologist as he peers and frowns at the screen before him.  He doesn't seem to like what he sees.  Or can't tell what it is he sees.  Then, we are done.  Sort of.  All folks but the nice lady leave.  She tells me that she is going to drain as much of the fluid from me as she can.  I hear fluid pouring into what turns out to be a garbage can.  Despite the flow, the pressure and pain does not decrease.  Finally, she feels she has drained all she can.  She removes the tube and helps me up.  I have to make it about 6 feet to the bathroom.  We manage the process.  Explosive emptying of more fluid.  I try to return to the wheelchair.  I go back to the bathroom instead.  And again.  With a sympathetic look, kind lady tells me we must return to the parking garage as the transporters have already come to pick me up.  They want to take me directly to surgery!  Back to the parking garage we go.  The transporters have departed but will soon return.  B is waiting for me in the furthermost corner of the room that is now quite full.  Two seconds after being parked, I tell B - I HAVE TO GO - now!  He wheels me to the bathroom.  I jump up with B trying to cover my behind to release another torrent of gastrografin. Back to our corner.  Moments later, I have to go, again - NOW!   He takes off - pushing me back to the bathroom.  I return to the wheelchair, but dash back into the potty again.  Sweet chocolate lady is a bit alarmed.  She has been helping B wheel me back and forth, trying to hold blankets to shield others from exposure to my nasty bare backside.  At this point, she starts moving misfits madly in a strange game of tetris so as to make a parking spot for me closer to the potty.  We try to convey our thanks.  I rush to the bathroom repeatedly.  Suddenly, the transporter appears and we head to pre-op.

Pre-op - I feel disgusting.  I am disgusting.  As the nurses try to settle me in bed and start the various questions and procedures needed for pre-op, I tell them I have to go.  I don't know if they are aware of the procedure I just completed or not.  The bathroom is several doors down the hall.  I must hoof it down there and back to my pre-op room.  I make the trip several times.  While there, I try to clean some of the gastrografin, sticky and mixed with my own excrement, off my bottom, my front, my stomach, with rough brown paper towels I dampen in the sink.  Slightly smug and handsome anesthesia man appears.  We repeat the issues I have with pain/vomiting/dyskinesia when asked about medications.  He agrees that marinol would be wise to repeat preoperatively and suggests an epidural to help with post-op pain.  Sounds good to me!  I get in position, seated on the side of the bed, bent over a bit so that he can place the tube in my spine.  Ooops!  Sorry, mister.  Gotta go!  And I do.  No one seems very pleased with me.  Least of all me.  Finally, I seem to be pooped out.  Epidural placed.  IV restarted. And, apparently, some drugs already given because when I ask if I will see my surgeon before surgery, the nurse tells me I've already seen him twice.  Oh, well.  What I want to know is the result of that dastardly enema!!!  WAS anything else seen in my colon???  He says no.  Okay.  Good.  B returns briefly, after being made leave at some point.  I must have dosed a minute.  Next thing I know, I am looking up at the bright lights of the OR and am being placed on a cold metal table.  Great!  This would freak some folks completely out!!!  Peeps would probably be better off snowed at this point!!!!  Even me.

Post-op -  Not as groggy as previously in recovery.  Reasonable - as this ta-dah took only 50 minutes while my prior surgery lasted over 4 hours.  No nausea. So that is good. They take me back to my room on the floor and B around 6 pm.  After my busy little afternoon, I now have an IV, a foley, NGT to suction, a drain/pump to my new and extended abdominal incision, leads with a telemetry box, and my epidural with its pump.  So very tired. There is pain, but the epidural is helping.  I rest some through the night.  In the morning, a person from anesthesia comes by to check the epidural.  He tells me he noted that I didn't push my button to get any additional meds through the epidural beyond the constant rate it was set at, so I must not have had much pain, huh?  Well, it was okay, I say.  BUT, I wasn't aware I HAD a button!!!  He doesn't have an answer to that and decides to decrease my continuous rate anyway, since I hadn't used my button.  Don't know if the actual decreased rate of pain med or the knowledge of the button made the difference, but I need and use my button now.

The struggle is real - Days and nights blur together.  I am to get up only to go to the bathroom while I have the epidural.   I remain NPO with the NG to suction.  Stooling begins again the day after surgery.  At first I try to take myself and all my bags and boxes to the bathroom.  But soon, B kindly sets up the bed side commode (Port-a-potty, as he calls it!) right by my bed.  He unhooks what he can, places my boxes and pumps just so, such that I can just stand, pivot and sit.  How much crap can one person contain????   I am thankful for the epidural.  It is helping.

Pain and folks who don't like it - Some nurses can't believe I don't want anything for pain.  I am no martyr.  I would love to be rendered unconscious until this is over.  I would happily take pain meds ~ if they didn't make me throw up ~ and if the meds for that didn't make me lose my mind!!!!  One night, when the pain was particularly bad, a rather old school battle ax nurse was determined that I take something.  She offers morphine, Oxycontin, dilaudid.  We explain the problem.  She has a look that says I am an idiot and B is a bully keeping pain meds from me.  "What about trying the dilaudid?" she asks.  "Does it cause less nausea?" I ask.  "Folks don't usually seem to have a problem with it."  B looks skeptical.  "Okay.  I've never had it before.  I'll try it."  When less than half of the 2 mg dose has been pushed into my IV, the nausea hits like a wall.  I force her to stop.  No, I don't want the rest of the dose.  So much for dilaudid.

Heparin and other bumps in the night - Post this surgery, as well as the prior one, I have been wearing compression boots that pump up and down much like blood pressure cuffs on your calves, while in bed (These are of a soft material which is an improvement over the plastic ones I had to wear after my thoracotomy.) and getting heparin injections to, theoretically, prevent the development of blood clots.  Usually heparin is administered to the abdomen, but having had surgery there (TWICE!!!) nurses opt to use my thighs, "since they are unaffected."  Hmmm....  The granulomas (scar tissue) that developed after all the peptide vaccines I was given in my trial are not as large and obvious as once they were.  Now, they are more like tiny hard marbles scattered beneath the skin all over my anterior thighs.  I warn the nurses of this.  Some don't seem to understand.  Some get it and ask us to help them find an unaffected area to inject.  One hits a granuloma head on and freaks the F out!  When she can't get the needle to go in, she mashes and smashes and wiggles it around, making a really impressive bruise in the process.  Oh well....  What's a girl to do?  But - BIG FYI NURSES!!!!!  When you have syringes with a retractable needle - you do NOT use that mechanism to withdraw the needle from your patient's flesh.  DON'T DO THAT!!!!!  Remove the needle from your patient, THEN retract your needle.  Common sense really.  Meanwhile, the sides of my thighs are becoming incredibly hot, swollen and red.  Is that normal after a zillion heparin injections?  I don't know.

Tubes/starvation/renal function - 2 days after surgery the NG is removed.  I start clear liquids.  I don't want them.  I am afraid.  Voluminous watery diarrhea continues every 1-2 hours.  My back and bootie are sore.  They ache and burn.  From being sat upon for so long.  From having foul things pour from them for weeks.  From referred abdominal pain.  From ever increasing edema to the entire area.  My feet are no longer skinny.  Still thankful for the epidural.  My urine, visible in the foley, is changing to a very odd pinkish red color.  Blood?  Infection?  Soon, there is almost no urine output - at all.  B is disturbed, fearing acute tubular necrosis, which can occur due to insufficient blood flow to the kidneys.  It can appear a few days after significant dehydration - for example!  I am too weak to get too worked up.  I know he will do it for me.  Daily labs reveal that my protein is very low as is my hemoglobin.  Albumin boluses are ordered.  B is concerned about my nutritional status.  Since admission 15 days prior, I have eaten:  1/3 of a grilled cheese, 5 noodles, a few bites of grits, about an ounce of tomato soup, 1 1/2 cans of ginger ale, 6 ounces of lemonade, a little tub of chocolate pudding, 8 ounces of Gatorade, about 4 ounces of broth, a few bites of scrambled egg, water and ice chips.  Most of this was within the first few days post op.  So ~ not much.  Negate that intake with  vomiting, removal of gastric contents via an NG to suction, and profuse, watery diarrhea every 1-2 hours for weeks.  Now, what???

Another nurse, another story and pee returns - Smart, skilled nurses are taking care of me (and B) during this crisis.  They agree with B that the albumin might have more effect if followed with lasix (a diuretic), but that is not how it is ordered.  We wait to see what happens.  My urine gradual clears and production resumes.  I am thankful.  I need no other complications!  Incidentally, for the past few days, with no explanation, techs have been checking my blood sugar three times a day.  When begun, I question why.  I am told it is floor protocol to check it before meals.  I remind them that I have no meals!  I'm NPO.  No answer to that one and the pokeage continues.  Whatever.  We carry on.  A new nurse arrives.  She is a bit 'off'.  Awkward.  Skittish, yet strangely talkative about herself, her daughter's maladies.  Okay, slightly weird unkempt lady.  Let's just get through this shift.  A bit later, she returns with my final bolus of albumin.  She starts removing the tape and dressing off my IV.  I ask why.  She says she is going to infuse the albumin directly into the hub of the IV itself.  I tell her that other nurses have been using the port in the tubing and show it to her.  "Oh," she says.  It is abundantly clear that she has no idea how to administer the infusion.  She inserts tubing into the small bottle of albumin, wasting most of it by draining it into the garbage. Attaches it to the port where it doesn't really infuse because she doesn't know how to set it up.  I should tell her how.  I lack the strength.  I receive little of the albumin.  Hopefully, the other doses have done what they need to do.  She leaves.  A few hours later, she's back.  Cheerily, she tells me, "I have your prilosec, heparin, and insulin."  "WHAT?????" I screech, as B bolts upright.  "I'm not on insulin!"  "We've been checking your glucose and administer insulin per a sliding scale and you need your insulin," she tells us.  I am incredulous! "You give insulin for a glucose of 119????"  "That's not what I was told...ahh...uhh...your last glucose was 119?"  "YES!"  Oh, my Lord!  Can you imagine what would have happened to my limp starved self if she had given me insulin?  Worse yet - can you imagine that anyone else would have known to say anything at all when she marched in running down a list of meds she is there to administer?  Heaven help you if you are in the hospital.  That shouldn't be the case.  But, it is.

Bye Felicia (Epidural) - A couple days later, having left the epidural in as long as allowed, it is to be removed.  The night prior, I make the most of it while I can.  Idea being, get some rest while it is still in place.  Didn't really help.  It is removed.  Within a few hours I am miserable.  Hot.  Flushed.  The foley catheter is burning.  I fear a urinary tract infection.  Catheter care was NEVER provided over the past 5 days. My perineum is red, grossly swollen, with hard indurated skin because the swelling is so extreme.  What the hell is up with that???  Different covering surgeon in for the weekend.  I request a U/A and culture to rule out UTI.  He allows it.  It is clear.  The foley is removed.  I remain miserable - irritable, hot, acutely ill feeling for the next several hours.  Eventually, I realize it is probably withdrawal to the infused drugs in my epidural.  Hmmm....  Makes sense.  But, why must I be the person to figure all this out?  Oh, well.  I void once the foley is removed with no problem.  Thank goodness.  I take a short walk.  I am weak and trembling.  I can't make the distance to see the unhappy quilt lady.

Discharged home, again - I work hard. To eat.  To walk.  To deal with the nasty that is my body.  I am down to an IV, my telemetry, and a drain with suction to my incision.  Monday afternoon, my surgeon appears.  Fine.  Go home.  Dressing to incision is removed.  Damn.  It's ugly.  More jacked up than it was before.  Three plus inches longer, running up and down my tummy, through my belly button.  Stapled.  Two additional smaller incisions, to the right side of my abdomen and low on my suprapubic area, appear to be healing well.  An inch long blister, which can only be a burn (Cautery instrument get a little too close during surgery, perhaps???) is raw and irritated on my left lower abdomen.  I try to fit my swollen belly, thighs and perineum into shorts that were too large for me when I arrived.  I give up.  Panties, tee, and a robe will have to do.  I'm rolled out to the parking lot.  My baby drives me home.  19 days of my life have disappeared in a nightmarish haze. be continued... c

Wednesday, September 26, 2018

Tales from the Crypt ~ Part 2

INCARCERATION   HOSPITALIZATION  RECIDIVISM (The tendency of the convicted criminal to re-offend.) ~

Home - I have been in the hospital for so long that luckily (?) my incisional pain has begun to improve.  Putrescence continues to pour out of me.  The cramping and tenseness of my abdomen are unrelenting.  B is hopeful that some quiet rest will make things better.  Ruthie heads home when we know we are to be discharged.  The thought of my own bed seems wonderful.  It is marred only by the fact that laying down is not easy.  Or comfortable.  Oh, well...  I am no worse off and no one is constantly knocking on the door or pricking me with needles.  The absent roar from the hospital's ventilation unit is most welcome.  I try to eat.  I try to rest.

What the???? - Having arrived home around 7pm the day prior, with trips to the bathroom every hour or so, by early am, I give up and rest in a recliner.  B coaxes me into a few bites of scrambled egg.  My stomach rebels and cramps.  But that's appropriate, considering, right?  Bizarre loud rushes and tinkly sounds can increasingly be heard within me.   B and I try to pretend it is okay.  Things are waking up, that's all.  Around 3 pm a neighbor drops by with still-warm, freshly baked pumpkin bread.  B rushes to fix me a piece.  I can't.  The pain is worsening.  I should walk.  Yes!  They told me to do that and I haven't done enough.  We get me up.  B says, "Okay.  5 turns round the living room."  On three...I can do no more.  The painful cramps drive me to the bathroom.  Nothing.  Then - vomiting.  B looks incredibly worried.  He calls the surgeon.  "Well, if you're worried, bring her in...but maybe things will just settle down.  These things take time."  Hmmm....  I try to rest.  To will my innards into calm submission.  The cramping seems worse.  I feel like such a wimp.  I thought I was tough.  Zap my brain and send me home.  Days later, I have the right upper lobe of my lung removed with a mere 3 day hospital stay.  I've endured a halo placed with ineffective anesthesia, chest tubes, the works.  How hard can this be?  I am so whiny.  I've got to stop.  Damn.  Poor B!!!  By 6 pm, profuse - green and foul - emesis I cannot control.  B becomes a man possessed.  Surgeon called.  "Which ER?  We are going in."  Hurtling down the mountain, the drive to the hospital is nightmarish.  B's face a hard mask.  I know what I am in for.  ER craziness.  An NGT and surgery.  I am sure I am obstructed.  I can NOT do this again.

ER - Rush to the ER and ~ wait.  I remain in pain.  The vomiting has relieved some pressure so the pain is ameliorated somewhat.  After our requisite hours, another new nurse in training.  Bless her heart.  She is young.  Still, I thought boards hard and was probably younger than she, when I first took mine.  I find her intellectual abilities inconsistent with the aptitude to pass the test I was given.  She cannot place the leads, work the O2 monitor, nor comprehend basic answers to her own questions.  I let her stick me for an IV - twice - despite the fact that she clearly does not know what she is doing.  The tourniquet is not actually on.  The skin and vein she is attempting to stick are not stabilized.  "This vein just doesn't want to be poked," she tells us.  B looks like a man about to explode.  Looking up, seemingly surprised that there are two humans in the room with her and that vein, some recognition dawns upon her vacuous brow that things may not be going well.  She attains help.  IV started efficiently by a nurse who seems that she, indeed, passed boards.  Yes, an NG must be placed.  We know.  B demands a ludicrously small gauge.  Smart nurse, is sympathetic, but tells him the floor will probably take it out and place a larger one if she does that.  I take his hand and we compromise on one a size down from my prior experience.  Yes, they will use lidocaine.  (Something I was shocked that the floor did NOT do.)  Lidocaine up your snoz is not fun and games.  I experienced it before with my bronch.  It smells and tastes horrible in ways I cannot really explain.  But it definitely it is worth it.  NG is placed by nurse who actually knows what she is doing, so though quite horrid, much better than the prior placement.  B dictates the taping.  I know I am severely dehydrated.  It is mildly interesting to feel/experience all the things you have diagnosed in others for years.  REAL dehydration is most unpleasant, FYI.  Sadly, the IV I have is at the bend of my arm and, not surprisingly, quits running should I inadvertently bend my arm.  B keeps watch as we have been left to our own devices.  A liter of putrescence is rapidly removed from my gut through my NGT.  We have talks with the ER doc regarding pain meds (they make me vomit) and meds to keep me from vomiting (they make me crazy and have spastic movements....which has only worn off in the past day or so!!!).  He seems a bit incredulous.  "So, what do you want me to do about your pain?"  Whatever, asshole.  I'll just deal with it.  I take nothing.
I am sent to x-ray.  The tech is efficient, though not as nice as the lady who let me do the slidey thing.  He just expects me to lay down, hop up, stand up, go over there.  I manage.  ER doc, returns.  Yep.  Obstructed.  "We'll get you to a room and let your surgeon know."  I am very dry.  The bag of fluid first hung runs out. B tells them. "Oh, okay.  We'll clamp it off.  They'll hang more when they get the orders on the floor."  What?  I am dry NOW!  You could be fixing that.  You have fluid.  I have an IV.  I can't get the surgical repair until I'm rehydrated.  Never mind....

We arrive on the floor around midnight.  Different floor this time.  Slightly cleaner.  Slightly less loud ventilation system with an actual labeled nob (Dare we call it a thermostat???) that can be turned to determine temperature, rather than the strange arrangement of the switch Ruthie and B had to reach blindly deep in the machine's innards in order to make adjustments at our previous location. But, no toilet paper, nor, toilet paper holder, as it had been a built-in ceramic version that is currently broken off with sharp edges that B covers in tape so I will not cut myself when I reach for the support bar next to the potty.  I have not slept in years.  I guess I'll never sleep again.  A quite elderly appearing female tech shows up for vital signs.  She sways interminably, staring at her BP machine and the distance without a word, like a similar soul in a nursing home - trying to decide whether to go over to the table to color a picture or just sit down on the sofa.  Finally, she turns to me, "You've got skinny feet."  "Yep," I reply.  "They go with the rest of me."  With a witch worthy cackle, vital signs are accomplished and she wanders off.  A quiet, but efficient nurse gets us settled in.  Fluids are restarted.  NG continues to drain lots of disgusting material.  Getting all that off makes the pain ease a bit. least no pooping for the moment.  Might as well enjoy the benefits of obstruction, no? be continued... c

Tuesday, September 25, 2018

Tales from the Crypt ~ Part 1


Arrival - We drive through streets I've traveled daily for over 30 years.  They look odd.  Too cheery.  Too dull.  Surreal.  We park in the asphalt labyrinth of marked spaces that surrounds the hospital.  Lights are flashing at every entrance. A constant, loud and grating, "BAH BAH BAH!" echos.  Once at the appropriate registration desk, a nice lady with a slightly Irish gnome appearance reassures us they are having but a drill as we shout to hear each other...reviewing my name, rank, serial number and funding.  "Okay.  So that will be $6,000.00.  How did you want to pay?" BAH, BAH, BAH! "I'm not." BAH, BAH, BAH! "What?  Didn't the financial office call you?" BAH, BAH, BAH! "Yes, they did." BAH, BAH, BAH! "Well, this is the calculation they made based on your insurance and...." BAH, BAH, BAH! "The deductible I will owe you for a surgical procedure per my insurance company is $500.00.  That is what I will pay you today." BAH, BAH, BAH!  "Oh, okay."  Transaction completed, I am rolled off to the surgical area - lights flashing.  BAH, BAH, BAH!

Pain - I expect it and it is there.  Waves.  Luckily, the marinol anesthesia gave me in pre-op really did prevent post anesthesia vomiting for the first time ever!  So...I can do this!  Eat they say.  I try.  It hurts.  Horrible things are excreted.  I capitulate.  Drugs.  Requisite nausea.  Requiring zofran and phenergan with every dose.  I try.  To think.  To make sense.  To have some sense of self.  Some sense of decorum.  Walk they say.  I do.  I can do this.  What is pain?

Loss of Control - There is no rest.  Knock, knock, knock. Followed by immediate entry.  Respiratory.  Knock, knock.  Food service.  Knock, knock, knock.  "I'm turning on the lights! Here to get your vital signs." Lab.  IV team.  Nursing.  CNA's.  We both lose focus.  We can't think.  We can't hear.  The nights are endless trips to the bathroom with foley and pole and pain.  The human body rebels at allowing the expulsion of it's innards while clenched in pain.  So one must try to relax.  Somehow.  B cradles my head, supports my weight, and rubs my back as I hold on to his pants leg.  The ventilating system (????) is incredibly, constantly, loudly roaring - no matter the setting.  I drive Brent crazy.  I am too hot.  I am freezing.  Pain and nausea drive my inner thermostat.  Every night, I hear singing as I watch the clock and various papers and bulletins float along the wall.  It comes from the rafters at the top right corner of the room, from my bed's perspective.  Sort of like a men's choir singing the Russian anthem crossed with Mannheim Steamroller.  I look forward to hearing it.  I know I am insane.  My arms and body seem to twitch.  I can't tell if I just feel it or if I really am jerking my limbs in clonic movements.  Then, as I try to drift off, both my arms strike the over bed table, startling me.  Oh.  So, it is real.  I shove my hands under my bottom to try to keep them still so that I can rest.  B can no longer hear or understand me.  Part of that is me.  Part of that is his utter exhaustion.  He calls in the troops.  But, even in my delirium, I know he has been unclear.  He has to call Ruthie back.  "Yes, I mean come NOW."

I rally - Ruthie arrives.  Her bright smile and sanity bring us strength.  She and B alternate the night shifts.  With even that small modicum of rest, B regains his hearing and faculties.  My adverse reaction to the phenergan and zofran with the jerking and drawing of my face are called dyskinesia.  A known reaction to these drugs, though I had never experienced them before. more of that.  Days are required to diminish the effect.  Toradol becomes my friend.  Though docs are cagey about how many total doses I'm allowed due to the potential for adverse effects on my kidneys.  I am determined.  I try to eat more.  Walk more.  Ruthie gets me.  As we walk I say, "I feel bad for that woman!"  Her face clouds, probably thinking - 'Okay, dokie.  Here she goes again!'  But, rapidly she brightens and replies, "No, shit.  It's really bad!  She's probably our age!"  We stop.  Looking at a print (a photo?) in the ward's hall, of a worn and weary woman, wearing a rather 'Little House on the Prairie' style bonnet, standing in front of quilts that seem to be hanging in the sun.  She stares hard back at us.  She doesn't appear happy to have been captured in this moment (in her life?) and I am certain that she would have been horrified to know she has been forced to hang in this fetid back hall of a hospital's abdominal ward for years.

Nursing - What happened to nursing?  Some nurses are nice.  Some are competent.  Some are frightening.  Some are cold.  But, are any of them nursing?  I have been scanned - repeatedly.  I have been required to give my name and date of birth - repeatedly.  Have I been nursed?  Have I been assessed?  Has my pain been evaluated in anything other than a number descriptor that I am forced to provide?  Have any interventions been discussed with me or my caretakers that might make my stay better?  My health return faster?  No.  I am rarely touched.  At all.  Probably a story for another time.  But - really?

No better - Profuse excretions continue.  My back aches.  My body aches.  My stomach remains swollen and tight.  I to nothing. I can't.  Tests are needed.  I am zipped down to radiology, to see what is, or isn't, happening in my recalcitrant abdomen, by a consistently kind, human, and efficient group - the transporters.  I am surprised to be taken, in my little nifty, side opening wheelchair, to a human parking garage.  Big open room.  Literal parking spaces, outlined with little bumpers, just like at Wally World.  I am backed rapidly and efficiently in my space between two half dead appearing peeps in their big beds.  Just me.  A little nasty woman smelling of dirty butt, parked right up in between here.  An incredibly nice chocolate brown lady in chocolate brown scrubs is kind to me and talks to me as others in their big beds go off for their tests.  She ignores the stench I know I possess despite B and Ruthie's best efforts to tamp it down.  She is kind to every person who enters.  She likes bar-b-que stuffed potatoes.  Me too.  Or I used to.  When I liked food.  I help her remember the name of her best place.  Rib and Loin.  Time for my film.  Nice tech.  To lie flat is horrible.  First time I have done so since surgery.  She helps me.  For the upright, the leaves me flat, but tilts the entire table straight up. Slowly.  Like a child on a slide, she helps me glide down until I am upright and standing.  It is a little fun.

Ileus - An answer.  Part of my gut is still not feeling it.  Not working, causing nothing.  Therefore, causing a back log.  The cure - time.  And a tube - down my nose and esophagus, to my stomach, placed to suction.  It is a nightmare.  The girl placing it is a newly hired nurse.  I have also been new.  I have done all things "for the first time" to my patients.  I have done horrible things, many times, to my patients.  I am sorry, sweet Tarren.   I try to make it okay in my mind to be that patient.  She doesn't even know how to measure the tube.  She does have a smart mentor - who shows her.  They use the largest one.  Ramming and ramming.  It will not Brent is frantically trying to tell them:  A) Don't use the right side.  She had melanoma to her right tonsil and had extensive surgery there causing secondary damage and scar tissue.  (That point is made..but....)  B) You cannot use that size, even on the left.  She has had problems with her turbinates...having to see an ENT...  Point not taken.  Until it is obvious.  Another size is chosen.  They begin again.  I am not in the proper position.  Which intellectually I know, but can't really grasp or act effectively upon.  B and Ruthie hold me up.  I gag and tears run.  My throat is raw.  Suction is applied.  I become a bit psycho crying and talking about Tarren.  Ruthie probably has no idea what to do...but she comforts me and treats me as though I am sane.  B seems to melt in dismay.  Not at me.  Just at the horror that has become our reality.  NPO, well maybe some ice chips.  I probably take too many.  But they are the only way I can tolerate the tube.  Liters and liters of disgusting material are removed from my gut.  I do feel better.  My ear hurts with referred pain from the NG.  That night I almost lose my mind with the pain and gagging.  I cannot place what is wrong.  B figures it out.  My NG has been slipping up and down.  He re-tapes it.  Holds my hand.  All night.  I rest.

Better??? - Ruthie and B have a system.  Unplug that.  Rev up suction, wrap in towel, disconnect and plug that.  Roll her and her crap to the crapper.  Over and over.  I have to have a scan.  Meaning lots of contrast down my tube.  As each syringe is pushed in, vomiting is practically certain.  Ruthie interprets my stop and go motions for the nurses.  I must do this.  I cannot vomit out this tube!   I can't do this.  I will do this.  She understands.  I cannot talk and prevent emesis at the same time.  Scan done.  Not much different.  Maybe better.  At some point the surgeon is flushing my tube.  I close my eyes to focus on my mantra:  I will not throw up.  I will not throw up!  As he flushes it, I startle and jump.  "You can feel that?" he asks with surprise.  "Yes, of course!  You poured cold water all over my arm."  "Oh," he says, chagrined.  The nurses laugh.

Homeward bound - I finally get rid of the tube.  I am to eat and get better.  Maybe home on Monday.  My surgeon is going to be out of town over the weekend.  Partner covering.  We carry on.  B and Ruthie are so incredibly sweet to me.  Ruthie washes me.  B shops for anything he thinks I might eat.  My stomach appears unchanged to me.  What do I know?  We have tried to be a little conservative in my diet...soft things.  I am anemic.  I am very weak.  Surgeon's partner - loud, overbearing, obnoxious, speaking more about himself than my care, tells me I'm good to go on Sunday.  "Eat what you like! Your gut will be fine.  Follow up next week."  But, what about this rare cancer (so categorized by the Institute of Rare Diseases, no less!!! ).  "Rare?  That's not rare.  I used to take out one or two a month."  Nothing to worry about.  Gotta go do more life saving surgery.  (Yep.  He said that.  I shit you not!!!)

After 11 days...I head home. be continued... c

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 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