I withdraw my endorsement!!!!!!!!!!!!!!!!!!!!!!!!

My exuberance at having survived the first infusion and 24 hours post oxaliplatin caused a pretty gross overstatement.  Treatment #1 is NOT done!!  It is still kicking my ass!!!  Oral capecitabine was started on Tuesday and between the two...   Yep.  Yesterday was spent in bed, the couch, or recliner.  Stomach cramps, diarrhea and nausea are for real.  Marinol is helping. 

Right arm still super sore with weird unpleasant sensations when anything, even a soft shirt sleeve, touches the area nearest the IV site.  Finger tips and soles of feet still odd.  Having sweats and chills.  Don't know if they are from a vasovagal response with the stomach issues or mixed up with having recently had my ovaries ripped out.  Good times! 

Was so proud that I was doing the elliptical for my big ol' ten minutes and getting in crunches daily for the past bit.  Well, that's not been happening since this crap!

On a positive note, there is this ENDORSEMENT that I can get behind!!!!

Opinion piece from the Times Free Press: District 27 needs Democrat Dr. Brent Morris 
Where they state, "District 27 state House Rep. Patsy Hazlewood, 68, wants a third term, but Democrat Dr. Brent Morris, 71, a retired pediatrician wants to take her seat. We're with him."

Check out this scene from September, when house hopefuls met voters at UTC. With the reporter noting: 

       District 27 Republican incumbent Patsy Hazlewood, whose background is in telecommunications and finance, cited her support for funding the Tennessee Colleges of Applied Technology.

"The best way out of poverty is a family-wage job," she said.

Her Democratic opponent, pediatrician Dr. Brent Morris, said people need to abandon "apathy and disillusionment" and exercise their political power through voting.

"We have the resources, we need but the will," he said.  

Of course on the flip side of the paper, there was this:

Pretty flattering NON-endorsement, if you ask me!!!

Election to the 27th is unlikely for B in this heavily republican district. However, I am incredibly proud of him no matter.  He collected no funds.  He spent {wasted} no money.  Still, he accomplished exactly what he set out to do!  By showing up and speaking out, B was able to remind people that there can be civil discourse, even when you disagree.  Demonstrate the NEED for a common middle.  Foster conversations and discussions about real problems facing ALL Tennesseans.  And while on every street corner and candidate event, kept a bright light focused on the common rights we all need and deserve, here in Tennessee, and across this great nation.

Thanks, B.  For everything. - les

Treatment #1 ~ 3 month regimen of Oxaliplatin and Capecitabine ~ is DONE!!!!!! Take that adenocarcinoma ex-goblet cell carcinoid!

Burying the lead may provide good story telling, but is unkind to dear ones, so... YESTERDAY WENT AS WELL AS COULD BE EXPECTED!!  And... Treatment #1 is DONE!!!  

Here's the tale:

Up, not quite at the butt crack of dawn, as our appointment was at 0830.  Routine was much like my trial in Tampa.  Check in at office.  Lab drawn.  (Folks in lab are very nice and good at what they do.  All labs thus far have been done with only one stick.  B has bonded with another uxorious husband who works there - and yes, he shared the word and the sentiment!)  Wait a bit.  Vital signs collected.  You see the doc.  Then on to the treatment room with Medical Meerkat Morris on hyper alert!!!  You know those cute little watchful weasel-like creatures in Africa?  Though I think B has only one call:  "BARK"!!

Much like the "CRU" (Yep.  In Tampa the treatment room was labeled with a big sign that read "Clinical Research Unit"!!!  Just a portion of the whole experience that contributed to my belief that I was part of the "Rats of NIMH' while being a rattie!!), the treatment room here consists of lots of fairly comfortable recliners, most with an ever so comfy straight chair sitting alongside, encircling two nursing stations in a large open room.  There are at least 3 similar rooms, as best I could tell, and all were packed!!  Way too many peeps needing cancer care!!!!!

The nurses were impressive.  They were all attentive, knew what they were talking about, sought help from others when they needed it, were the right balance of compassion and humor, and demonstrated some of the best team work I have observed anywhere!!!!  Since I was new, my nurse spent a great deal of time going over a packet of materials on my drug, the process, side effects, when to call, who to call, and everything else you can think of.  She answered all our questions.  Was attentive to the reactions I had had to phenergan and zofran...as those are drugs they administer frequently and routinely.  Time consuming, but super important.

She was alarmed at my "limited" veins and "hoped I had enough to get through my 4 doses".  I don't see them that way...but the one doing the sticking has the deciding vote.  I think the scar on my left forearm startled her, however, Oxaliplatin is caustic, variously described as a "vesicant" or an "irritant" depending the source.  Bottom line - it is rough on veins.  Because of that, they will not start your IV in your hand or antecubital (inner aspect of elbow).  At any rate, IV going first stick.  Fluids started, followed by decadron, and then Aprepitant (brand name - emend) as pre-meds to help prevent side effects, specifically nausea and vomiting.  By the way, the same med for use in dogs is a ton cheaper and named "Cerenia".  I like the serene connotation, there!!!

There is an in-house pharmacy.  No meds are ready when you arrive.  They start making up your chemo cocktail once the doc gives the go-ahead - as there may be a dose reduction, a med held, shelf-life to be considered, etc.  So, you wait.  In my case, that is actually good, since per our reading, the aprepitant should be given about an hour before chemo to work best.  Not sure we waited a full hour, but it was at least 30 minutes.

You can bring snacks.  B had me set with peanut butter, crackers, and green ginger tea.  A church group came by offering chips, sandwiches and water - FREE - to patients and staff!  How nice is that?  Now THAT'S what Jesus would do!!!!  You are advised to eat before the infusion.  And while the thought of eating before getting something that can making you throw up seems nonsensical and yucky to me, since they say things go better if NOT taken on an empty stomach, I did as I was told, having Cheerios with banana and milk, tea and toast for breakfast before leaving home.

My arm started burning near the IV site as soon as the Oxaliplatin was started.  The nurse advised me that this was expected, having already told me initially that it was going to burn all the way up my vein which would likely be hard and unusable at my next visit.  She shared that they use a small bore needle so that the catheter won't block the vessel entirely, allowing normal blood flow to help dilute the chemo.  She also ran IVF (fluid) simultaneously, to dilute the chemo further.  That said, it proceeded to get worse indeed.  B wanted me to tell the nurses about it...but I figured - THEY JUST SAID IT WAS GOING TO BURN!!!  However, as the pain and the Medical Meerkat became more intense, I did talk to them.  That got me a little heating pad for my arm and a decreased chemo rate with an increased IVF rate...which they maintained at a total of 500 ml/h!  That's a lot y'all!!!  Anyhow, those changes helped a bit, although the horse was already out of the barn!!  Yes.  B was right.  I'll ask sooner next time.  Now I know there are interventions!!!!

About an hour into the chemo infusion I started feeling a bit queasy.  As I already mentioned, I had already been given decadron and aprepitant for nausea.  However, nausea with this drug comes in two stages.  The acute phase that starts from infusion and lasts about 24 hours or so and is caused by direct effect of the med on the GI tract.  Meds to treat that phase are:  decadron or zofran and phenergan!  The last two being drugs I had an unfortunate reaction to!!  The second stage of nausea is reported to last up to 4 - 5 days, with symptoms starting on day two, and is caused by the chemo's effect on the central nervous system specifically at vomiting centers in the brain.  Drugs that help with this stage are:  Aprepitant, which as luck would have it, one IV dose lasts about 120 h.  Now, apart from the aprepitant you could continue the zofran, decadron, and phenergan as needed for nausea or vomiting.  For me and my weirdness, we have available:  decadron, ativan, and Marinol to use as needed at home.  I am also sipping a lot of ginger tea and taking a capsule of ginger each morning.  All that to say, B slipped out to the car and got me a Marinol.  However, I think it is one of those things it is best to stay ahead of than to chase!!!  By the end of the infusion, nausea hit like an all too familiar wall.

The ride home was a little tricky, but I manged to avoid using B's nifty emesis basin.

Home around 2pm.  Had cramping and diarrhea.  Washed my face. Napped for about 2 hours.  I woke feeling much better.  Marinol finally kicked in while napping.  Felt a bit goofy, but hey, it was better than feeling sick!  Wanted to wash my face, but on touching tepid, room temperature water my fingers went all jingy jangy!  That was weird.  Warm water was fine.  My arm was still really painful, both within and without.  I'm pretty convinced that the injury was two fold.  Yes, there is deep pain from the irritant that is Oxaliplatin.  But my IV rate was so rapid that the whole arm became very cold.  Given the sensations I'm experiencing in that area, I think exposure to the cold  infusion triggered neuropathies as well.

Anyhow, I snacked on various things...until B was afraid for me to eat much more lest I get sick.  He said I had the munchies from the Marinol.  Whatever, party pooper!!!  Got some pretty good sleep during my usual 2 hour increments through the night.  Was up for a bit...probably due to the decadron.  But, not bad considering.

This morning I started the oral drug, Capecitabine.  It has such a high incidence of diarrhea and painful redness and irritation to palms and soles as side effects that it arrives with lomotil and a thick skin balm!!  No diarrhea today.  Just took my second dose of the day about an hour ago.  No horrible problems yet.

A bit tired and weak all day.  I've eaten fairly well.  Had only some queasiness off and on.  Nothing to complain of considering.  The arm pain is gradually improving.  The neuropathies are most noticeable to my fingers.  I've hit a ton of wrong keys while typing this.  But warmth (Roo and B got me some heated slippers and gloves!  I think I've made it clear I am indeed spoiled!!) helps rapidly.  It has not been painful, exactly...just weird shock like sensations with a deceased ability to manipulate things the way you otherwise might.  Did acquire another weird, known side effect - pain in your jaw when you bite down on something...even if it's soft!!  Once you bite down on both sides, the pain is pretty much gone for that round.  But, it has recurred with each meal so far.  My throat feels a little odd, but doesn't hurt.

So...as I said before.  There have been some 'interesting moments'!!!  But, since they were mostly limited to 'moments', it was much more manageable than it could have been.  I have to have labs checked weekly on Mondays.  I think if I had taken Marinol before the infusion, I may have been able to avoid the worst of the nausea I experienced, so we may check and see if that is what we should do next time.  It has been made pretty clear that side effects are cumulative with these drugs.  Still,  overall, thus far....things are going far better than I feared!!!

PERSONAL NOTE (As though I could write another kind!!!!):  I hope very much that the changed tenor of some of my posts are not perceived to be as whiny as I sometimes feel they are!  I have no desire to bemoan my fate, act as though I am enduring something beyond that which zillions of folks are undergoing daily (especially when in truth, ever so many people across the globe are dealing with struggles and pain far greater than mine!!), or seek undue sympathy.
My rationale for this blog and what I share follows:

• I have ALWAYS worked to keep my posts honest.  
• Writing helps me plow through my thoughts and experiences.
• I like telling stories.
• About a year into this endeavor, I discovered folks with melanoma were desperate for information!!!  Immunotherapy was new! Finding info from someone else marching through the trenches was valuable to others!! I was quizzed:  "How is it administered?  How did you feel?  Were there side effects?  What did you do?  How are your scans?  What do the doctors say?"  Data didn't really exist.  Access to available data was limited.  Viola'!!!  I could help fill that void!  
• Through those efforts I feel that I have done a bit of good for at least some melanoma patients and their families.  
• Whatever I have or haven't been able to provide, I know I have received far more than I have given!!  I have gained support and love from dear ones as well as new folks across the globe, and made wonderful dear friends I would have never known otherwise.
• Given that experience and my seamless transition to a new, even rarer cancer with ZERO data in the way of what works for treatment - well, I think you can see where I'm heading!!  I don't mean to drone on about misery and side effects...but knowing what to expect is important to me when looking to jump off into this mess, so I figure other inquiring minds will want to know.  
• Far flung peeps still express their love and desire to know what is going on, so blogging is an easy way to keep folks apprised. 
• And finally, because a girl has to have fun ~ sewing, cooking, and music ~ can't be left out!  Even better, sewing posts have allowed me to meet some of the most incredible, honest, life embracing, human-KIND, politically active and culturally aware, wise, open, intelligent, creative women who - yeah - also sew amazing garments.  It. Has. Been. Awesome.

This run-on explanation is likely unnecessary.  Headings of posts should help you if you are only interested in portions of my jabberings!  Sew Chaotically! - heads sewing posts.  "Melanoma", "carcinoid", or drug names are descriptors as well, though good ol' appendiceal carcinoid will be listed in titles about my current crazy, so that interested peeps may be able gain access to them.

When critiquing writing for family and friends...at THEIR request!!!....I frequently fuss if they are a Babylonian!!!  Just look at this perfect example!!  I've babbled on and babbled on!!!
Much love and thanks for your constant love, support and understanding.  - les

I'm off the deep end, watch as I dive in...

Here we go, Bentie ~

Shallow ~ Lady Gaga, Bradley Cooper (A Star is Born)

SHALLOW

Tell me somethin', girl
Are you happy in this modern world?
Or do you need more?
Is there somethin' else you're searching for?

I'm falling -
In all the good times I find myself
Longing for change
And in the bad times I fear myself

Tell me somethin', boy
Aren't you tired of trying to fill that void?
Or do you need more?
Ain't it hard keeping it so hard core?

I'm falling - 
In all the good times I find myself
Longing for change
And in the bad times I fear myself

I'm off the deep end, watch as I dive in
I'll never meet the ground
Crash through the surface, where they can't hurt us
We're far from the shallow now

In the shallow, shallow
In the shallow, shallow
In the shallow, shallow
We're far from the shallow now

Oh, oh, oh, oh.  Whoah!

I'm off the deep end, watch as I dive in
I'll never meet the ground
Crash through the surface, where they can't hurt us
We're far from the shallow now.
       ~ Andrew Wyatt, Anthony Rossomando, Mark Ronson, Stefani Germanotta

Sorry, baby.  We're far from the shallow now.  I love you.  - Les

P.S.  Made it through Day One pretty well, as best I can tell.  Some 'interesting' moments, for sure!!  Plan to tell the tale tomorrow.  Love to each of you!!! - c

Impact of anti-PD-1 on T-cells....information that may lead to making anti-PD-1 more effective!!!

Wanted to share these posts before I embark on my new adventure.  These abstracts do not include anything that is directly impacting the care of melanoma patients today....but are hopeful in the sense that smart peeps are continuing to look at what happens in melanoma peeps for whom anti-PD-1 works.  In the end, I am certain that this will result in improved efficacy for all!!!

Activation of central/effector memory T cells and Th1 polarization in malignant melanoma patients treated with anti-PD-1 antibody. Yamaguchi, Mishima, Ohmura, et al.  Cancer Sci. 2018 Aug 1.

Human anti-programmed death-1 (PD-1) antibody possesses the capability to revitalize host T cells and has been an effective therapy for metastatic malignant melanoma (MM). However, the precise subsets of T cells predominantly activated by anti-PD-1 have not yet been clarified. In this study, peripheral blood mononuclear cells obtained from MM patients scheduled to receive anti-PD-1 (nivolumab) therapy, and healthy subjects (HS), were systematically examined by flow cytometry to identify changes in the proportion of immune cell subsets. Compared with HS, MM patients prior to therapy demonstrated an increased proportion of activated CD8+ T cells with effector memory phenotypes (Tem), and PD-1 positive subsets of CD4+ central memory T cells (Tcm) and Th17 cells. After a single course of anti-PD-1 therapy, MM patients showed an increase in activated Tem and Tcm subsets of CD4+ and CD8+ T cells, and activated Th1 plus Tfh1 cells. There was no consistent change in the proportion of Tfh cells, B cells, natural killer cells, or dendritic cells. The observed activated phenotypes were attenuated during the course of therapy; however, regulatory T cells belonging to the CD3+CD4+CD45RO+CD25high fraction increased at the disease progression. Taken together, anti-PD-1 therapy modulates systemic immune reactions and exerts anti-tumor effects, not only by revitalizing Tem and Tcm of CD4+ and CD8+ T cells, but also via a shift to a Th1 phenotype.

Resident Memory-Like Tumor-Infiltrating Lymphocytes (TIL_RM): Latest Players in the Immuno-Oncology Repertoire. Smazynski, Webb.  Front Immunol. 2018 Jul 26 

Resident memory T cells (T_RM) are a recently identified subset of long-lived memory T cells that are characterized in terms of their unique surface phenotype combined with a non-recirculating pattern of localization to non-lymphoid, peripheral tissues. T_RM have quickly become a key area of focus in understanding immune responses to microbial infection in so-called "barrier" tissues, and appear to be particularly critical for protection against repeat exposure at the same site. More recently, tumor-infiltrating T cells with canonical T_RM features are being identified in human cancers, in particular cancers of epithelial origin, and their presence is broadly found to be associated with favorable long-term prognosis. Moreover, recent studies have shown that these "resident memory-like" tumor-infiltrating lymphocytes (referred to herein as TIL_RM) are uniquely activated in melanoma patients undergoing PD-1 directed checkpoint blockade therapy. Accordingly, there is much interest at present regarding the biology of these cells and their precise role in anti-cancer immunity. Herein, we review the current state of the literature regarding TIL_RM with a specific emphasis on their specificity, origins, and relationship to conventional pathogen-specific T_RM and speculate upon the way(s) in which they might contribute to improved prognosis for cancer patients. We discuss the growing body of evidence that suggests TIL_RM may represent a population of bona-fide tumor-reactive T cells and the attractive possibility of leveraging this cell population for future immunotherapy.

Decreased Suppression and Increased Phosphorylated STAT3 in Regulatory T-cells are Associated with Benefit from Adjuvant PD-1 Blockade in Resected Metastatic Melanoma.  Woods, Ramakrishnan, Laino, ..., Weber.  Clin Cancer Res. 2018 Aug 21.

PD-1 blockade induces durable responses in patients with metastatic melanoma and prolongs relapse-free survival in patients with resected melanoma; however, current biomarkers do not consistently associate with patient responses. In this study we investigated the impact of nivolumab therapy on peripheral blood Tregs and its relation to patient outcomes.

Peripheral blood Tregs and conventional CD4+ T-cells from patients with resected high-risk melanoma treated with adjuvant nivolumab were assessed for gene expression changes by RNA-seq. Percentages of circulating Tregs and phosphorylated-STAT3 (pSTAT3) expression levels were assessed by flow cytometry and validated in an independent cohort of active disease patients. Suppressive function of Tregs was assessed in allogeneic mixed lymphocyte reactions.

Tregs from non-relapse patients had increased expression of proliferation associated genes. An increase in the proportion of circulating Tregs and pSTAT3 expression and a reduction in Treg suppressive capacity were observed in non-relapsing, but not relapsing patient samples 13 weeks after starting treatment. In vitro blockade of PD-1 increased Treg percentages and pSTAT3 expression, and reduced Treg suppressive function. PD-1 blockade also led to IL-10 production by T-cells, resulting in higher Treg proliferation. The addition of a STAT3 inhibitor ameliorated the increase in Tregs, enhanced suppressive function, and decreased T-cell IL-10 production in vitro.

These results demonstrate that induction of pSTAT3, reduced suppressive function, and a paradoxical increase in Treg proliferation are novel correlates of patient benefit from PD-1 blockade.

I've placed in bold what I think most pertinent.  Hang tough ratties.  My best to each of you. - c

From melanoma darling to step child of colon cancer...

B gets credit for the title, but it seems pretty apt.  Having been on the cutting edge of the BRAVE NEW WORLD in melanoma treatment and immunotherapy, with the best possible outcome and minimal side effects compared to others, I now enter a real unknown!!!  Yes, Opdivo left me with fatigue, wheezing, joint pain, and pretty horrible mouth ulcers. Yes, the peptide vaccines that were part of my trial were painful and useless, leaving me with BB-like scar tissue in both my thighs.  Still, all small potatoes compared to the adverse, permanent events experienced by many and certainly a small price to pay for the years of health, love and joy I have been allowed to experience in these past 8 years as a Stage IV melanoma patient - especially as one given a shelf life of 6 months in 2010!  A miraculous outcome indeed.

Now, I enter the twilight zone of unknowns again.  Just as there was no viable treatment for melanoma at my initial diagnosis in 2003, there is no definitive treatment for "adenocarcinoma ex-goblet cell carinoid"  now.  We have heard no more from Vandy.  We have resigned ourselves to the fact that what we know now, mostly due to B's dedicating every minute and untold energy in learning literally ALL there is to know about appendiceal carcinoma since being broadsided on August 30, is all that we can know.  From that, we have gleaned:

• I am Stage 2a, per our local pathologist, barely...as I had negative nodes, clear margins, negative bits and bobs, and the tumor had not breached the serosa (the membrane that covers the organs in your abdomen).  It was less than 0.1 mm away.  But, hey!  A miss is a mile!!!
• On a cellular level, my tumor was rather nasty (could have been worse) with lots of undifferentiated cells (indicating they have good potential for spread) and 75% of its material being made of adenocarcinoma (the bad colon cancer sort).
• Given those particulars, I am told that I have a 25% chance of recurrence.  Most likely to rear its ugly head in the next 2-3 years if it is going to.
• I could legitimately do nothing more than watch and wait as there is no definitive treatment for this particular cancer, most especially as an adjuvant - meaning, as a treatment for a person who has had all obvious clumps of their cancer removed.
• However, as close as I was to being Stage 3, with the nasty character of the tumor cells, the oncologists at Vanderbilt strongly recommended a three month course of two chemo meds:  oxaliplatin and capecitabine.
• Oxaliplatin is given through an IV, once every 3 weeks. Most common side effects are nausea, vomiting, and neuropathies (tingling, numbness, pain - most often to hands and feet).
• Capecitabine is taken in pill form twice a day, everyday for two weeks, starting on the day of the IV drug.  Most common SE's are diarrhea and pain with peeling skin to palms and soles.
• You are then given one week "off", after which you repeat, with 4 cycles in a 3 month period.
• There are no studies, or even retrospective reviews, that compare outcomes of those with my cancer who did this regimen vs those who did nothing - to see who fared better.  All the Vandy docs could tell us is that in their experience with folks like me and folks with colon cancer, their 'gestalt' was, folks who do the treatment do better.  Noting that I may be able to buy myself a 10% decrease in the odds of recurrence. 

We met with my local oncologist Thursday.  Given there ARE no answers, she could not give us any further information regarding treatment and results.  However, she was clearly well versed in the prescribed protocol and inspired my confidence through her familiarity with potential side effects and plans for how to deal with each of them should they occur.  She was able to meet B's drug list and even raise him a couple in regard to treatment options for nausea and vomiting given my recent unfortunate adverse reactions to zofran and phenergan.  She was a bit more reassuring regarding the occurrence of n/v, though slightly more alarming regarding the incidence of diarrhea in her patient population.  Oh, well... Sounds like folks on this crap are in for one gastric upset or another.  She, (like the Vandy docs as I mentioned at the bottom of this post) was reassuring regarding the potential for permanent neuropathy.  She felt, as did they, that since the 3 month regimen administers a limited quantity of the drug, the threshold at which permanent neuropathy occurs is not reached.  Should neuopathies that ARE expected in the initial phase (from infusion of Oxaliplatin and over the following few days) NOT resolve by the next round of treatment, a drug decrease should diminish them and prevent them from becoming permanent.  Finally, she did not recommend, nor see the necessity for the placement of a port given that only 4 doses of IV meds would be prescribed.

After lots of thought, lots of talks with B and many of you - I'm going to do it.  I will have my first treatment Monday.  If plans are not adjusted (infusions can be delayed if one is dealing with side effects) treatment dates are scheduled for:  10/15, 11/5, 11/26, 12/17.   Not sure this craziness will provide any benefit.  Not sure of much.  But with B's care, the love of all of you, and my own perverse tenacity - I'll get her done.  I think we need to plan for a heck of a party come 2019!!! ~ les

Sew Chaotically! - Sew Liberated's Matcha top!! (Post from - BCR2!!! Before cancer round 2!!!!) And a NON-update on my treatment plan!

Sew!!  Just before at least part of my life went straight in the crapper, I made this little top.  I had seen cute sleeveless versions of it on blogs and IG feeds over the summer and liked the breezy nature of it.  When MOOD had a sale on crepe, with this lovely blue at $3 a yard - Girl, it was a done deal!

Per various sewists and the advice on the pattern itself, I sewed the size indicated by my shoulder measurements.  I think I could go down just a bit on the next one, but I wanted it loose and swingy, so I'm happy with how it turned out.

Over a month ago, when I saw these pis, I was thinking, "Those jeans are WAY too big!!!"  Don't EVEN want to ponder how they'd fit now!  I liked the color combo, though they are too low riding for this 54 year old chic to be wearing them with this particular top!  Issues for another time!

The pattern came together pretty well.  It was a little tricky determining which collar notch to match with which.  That might be my bad with taking less care than I should have.  It worked out fine with a bit of head scratching.  Will take more care next time and let you know how it goes.

I think the back is pretty.

The shoulders have these caps which are nice.

Went to the trouble to hem the sleeves and waist by hand, which I always assumed was the "nicest" way to finish things.  It looked a mess.  So, I took it out and used a "baby hem".  Much better!!!

As you can see in this pic...the outdoor lighting project was in process!!!!

As for today....  Have a meeting with my local oncologist this afternoon.  Am not currently thrilled with Vandy as my slides were NOT reviewed by their pathologist on Friday as we were told they would be.  Nor was my case presented to the tumor board on Tuesday as we were told it would be.  In fact, I have a very strong suspicion that nobody remembered a damn thing about any of it until B started sending emails and leaving messages yesterday trying to get the RESULTS in preparation for our meeting today!!!  Just after those requests were sent out we got a phone call from a nurse stuck with the task of dealing with us, who let us know...  "Hmmm....  Yeah, well...  Actually, we don't have your slides.  But, I've requested them now...and we should get results in a week or two."  Are you kidding me?????  Not her fault.  Not sure if the slides not being there is the fault of Vandy's lack of requesting them or Memorial's lack of sending.  Either one is problematic.  But the bigger issue is why didn't someone notice that the pathology report did not happen on FRIDAY OF LAST WEEK??????  What is with people?  When I told parents I would get labs and call them ~ I got the labs and CALLED THEM!!!!!

At any rate.  Later B put in additional calls to try to get more info regarding the potential side effect of neuropathy with my proposed chemo.  It is something that does occur, per multiple sources, 90% of the time.  It comes in 2 phases.  The acute phase is due to the effect the chemo has on your sodium channels, which changes how your nerves reset and fire.  This phase can happen as soon as the drug starts infusing.  It involves pain, numbness, weird sensations to fingers, feet and various other parts.  It should resolve in a couple of days.  However, there is a later phase that can occur creating the risk of the condition becoming permanent.  It is due to the chemo's effect on the actual neurons, incidentally damaging and/or killing them as it (hopefully) simultaneously destroys your cancer cells.  Old school chemo is somewhat lacking in precision to say the least.  So, not only is the poor man distraught (we both are) at the thought of trying to deal with my likely nausea, vomiting, and subsequent decreased intake given the treatment and problems with meds for same.  The neuropathy issue is really worrying him as well, since as he tearfully put it (And Bentie doesn't do tears often y'all!!!) - "I don't know if a hypothetical chance for a 10% decrease in recurrence is worth it to you if you could no longer do the things you love....sew, crochet, play the piano, type, take care of your patients....." 

Again, nurse set to the task of placating the crazy people returned his call initially, but  Dr. Das did finally call back.  His take on my chance for neuropathy was that it is unlikely to become a permanent condition.
1.  Because - I will only be taking the meds for 3 months, therefore the overall quantity of the drug I will take will not reach the threshold of the amount where chronic neuropathy usually occurs.
2.  Because - if I do have signs of neuropathy after the med is infused, and they have not resolved by the time of the next infusion, a dose reduction should be done and that should prevent the development of a permanent condition.
Stating in the end that, "Most patients on this regimen deal with neuropathies very well."  B pointed out that he had worked in intensive care for 17 years, and that outcomes to traumatic brain injuries that neurologists may report as "good" or "manageable" were often not looked upon in the same way by the parents and caregivers of those children!!!  Das noted that that was an important and valid point, but still felt that permanent damage resulting in chronic neuropathy was unlikely in my situation.

So...whatever the hell that means.  Also, and somewhat strangely given what we had already been told regarding my slides, he reported that my specimens were now in hand and he had spoken with the pathologist at Vandy who would be reviewing them in the next "48 hours".  All of that sounds a bit strange to me.  Especially since at our visit we were definitively told they "had everything".  Oh, well.  As far as the path review, I'm not sure what it will provide.  I don't think my diagnosis will change.  I don't think my stage will get better.  It could only be categorized as worse.  Ox is a great pathologist.  He knows what he is doing.   He has proven his knowledge in the past.  Would we really take someone else's opinion over his?  We don't really have time to send things out to a third person for arbitration as we did when we started our trip into melanoma world.

We'll see what happens next.  Bout to hem some dresses and run all this by the onc this afternoon.  Whoo hooo!  Good times!

Love to all of you. - les

Refashion #4 ~ This time WITH fashion...really!! (It's soooo bad!!!)

Rosie was my main coach, butt kicker and cheerleader getting me back into shape after lung surgery.  She's at it again.  This time, at least for now, using a slightly different approach!  She spent the afternoon with me yesterday.  We had the BEST time.  Her new tactic?  Getting my tummy back into shape by making me laugh until it hurts!!!!  It was WONDERFUL!!!

Let me explain.  This sewist "refashioner" thing I've been poking my thumb at ~
Here: REFASHION! (It covers a lot!)
And here:  Refashion #2 ~ and a buried lead from weird, wacky, melanoma world!!!!
And from just yesterday:  Refashion #3 ~ (albeit a couple of months ago!!!!)
~ with my household "refurbishments" is serious business!  It's a lifestyle.  It's an aesthetic.  It's a contest !!!  These peeps have serious skills.  Honestly - check out some of Sasha's refashions:
Pants into this amazing top 
I mean, she turned a suit into a suit! But...OMG!!!
And there's this amazing structured top and flowing skirt from Charlie, at Noble and Daughter.

Sorry...don't know who to credit for this image from the internet!

Sew!  It's for real!  Over the past couple of seasons, you may have seen various tee's and sweaters styled like this one.  Rosie is no roving fashion maven.  She has a good eye.  Knows and has her own personal, distinct style.  Still, she likes to play with the occasional trend and had admired similar tops when in a shop together a bit ago.  That got me thinking....  Happened to have an only slightly worn, purple sweater.  That we later discovered had a stain just below one elbow, but never mind!  Rosie is a purple durple!  Sweater a little more straight laced (pun intended!!  HA!!!) than what is likely optimal, but we refashioners can work around such minor difficulties!!  With that, we were off!

How hard can this be, right?  We started by slicing straight up the back.  Went to the trouble to serge raw edges, apply interfacing to edge, stitch into place.  Rosie had the great idea to "Fibonacci" the placement of the button holes I made for the ribbon to thread through.  (If you are like me, and are NOT mathematical geniuses, a Fibonaccci sequence is a series of numbers in which each number is the sum of the two proceeding numbers.)  Her plan made it so that the holes were further apart at the neck and closer together at the bottom.  Probably the only wise decision made in this entire process!!!

Okay.  It's not great.  Could be worse.  Maybe we just need another set of holes at the bottom?

Hmm....  Front not looking too good either....

Well, as Oonaballoona, aka Marcy Harriell, says, "Sometimes you just gotta turn that s#!t around!"

Okay.  Maybe not!

Roo found a better place for the ribbon!  Yes, that's B in the background!  Putting together a PDF pattern!!!  You are 100% correct!  I am totally spoiled.  They are playing ALL my games!!!!

Sometimes the better part of valor is to take control of the situation yourself!  Roo opted to stitch up the back/now front seam again and shorten the sleeves - cause FASHION (and stain removal)!!

A true fashionista!!!

Such sweetness.

I think we should burn the sweater in a dumpster fire.  But, I'm keeping the girl!!!

Yesterday was pretty busy all around.  Had recheck with surgeon.  He thought I was healing well and looking better.  Intimated that he would probably do the 3 month chemo plan.  Doubted I would need a port for IV access.  Would be happy to put it in, should I need it.  Said I could eat and exercise with no limitations other than what I felt up to.  No necessity to follow-up further unless I had a need.  Still haven't heard back from pathology or the tumor board at Vandy....so I guess we'll be calling them if we don't hear from them today.  Have appointment with local oncologist tomorrow.

In regard to my particulars:  Despite a 1 pound weight loss, I continue to eat very well - 4-5 times a day.  I have been sleeping more often in 4 hour increments, vs the up every 2 hour scenario, so that is good!  Over the past 3 days, as I noted in a previous comment, I have been doing the elliptical for 10 minutes at level 3.  Although, BEFORE I was doing 20 minutes at level 8 followed by core work (push-ups, sit-ups, planks, etc.) on days I didn't go to Barre or run.  But, as Carol wisely pointed out, I've got to put the past in the past and push on to my future.  So I am!!!

Rosie and I accomplished more than the destruction an innocent sweater!  We made concrete plans for garments I will be making for her in the next little bit.  She was also tickled with and did the final fitting for TWO super cute dresses I have been working on for her. Hopefully, I will be finishing those today.  But, most of all....we played and laughed and loved and lived.  Thanks, Roo!  I love you ever so much.  You are a blessing in my life. - mommy/les