Thursday, October 11, 2018

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

3 comments:

  1. Well! I think your shirt looks fine! It's cute! I hope this appt goes well and you all have a good talk and get some helpful answers. I have neuropathy in my feet and it is everything you describe here. Prayers that it gets better. Mine is. Slowly. But surely. I know what I've been through and I understand what you're going through and I realize we're all different but I can tell you, Les, that at least in my case, it's been worth it to be here and doing better than anyone ever thought I would. Hang in there, keep sewing and doing what makes your heart sing and full. Keep hanging on to B...he's a proven keeper! :) I look forward to seeing your next accomplishment!

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  2. I hear you!! Ever so many, you most certainly, have endured so many side effects - some transient, some permanent - to all sorts of cancer treatments. I had my fair share (though most are now resolved) after my surgeries and 2 1/2 year nivo trial. Lot's of super sucky things are worth it if we can spend more time with those we love. I risked a lot of unknowns when I took Nivo (Opdivo) in 2010...before even ipi was FDA approved. However, there was pretty good evidence, even then, that immunotherapy was effective in melanoma. If a treatment is effective....side effects are much more tolerable. My problem currently is that we have NO real direct data that absolutely indicates that THIS treatment, with its potential side effects, will have any effect on my cancer at all. That's why I ponder whether these potential side effects are worth it. But, neither life nor cancer treatment comes with guarantees!! So we all gotta do the best we can!!! Thanks for your vote of confidence. You are an inspiration to ever so many of us!!!

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    1. Yeah. You're right. And we don't know what's going to happen until we either try, or we choose to NOT try. But there will be so-called "side-effects" from everything, be it meds, radiation, surgery, or events of life. Just gotta do the best you can where you are as you are. I can't even take aspirin, so I knew when I was offered Interferon in 2008 (the only thing offered in 2008 for stage 3b) that I would have the worst side effects possible, so I refused it. I knew that if my mel progressed, I'd need a working liver, heart, etc. So, I wasn't going to let Interferon mess with how good I was doing at the time...I did surgery only, and had my twice yearly visit with my surgical onc, and that worked fine until Sept 2015 and you know the rest. But when mel kicked in then, I was in a healthy place. I knew, from my life medical history, that I'd have side effects with everything and I knew I'd have the worst ones...but MY side effects weren't in the lists, I saw, of possible side effects. Mine were so bad and rare they didn't make the list! It wasn't mel that was going to kill me, it was my side effects...but you know what? I can look back now and say it's been totally worth it. Even if I had died when they said I would, I did exactly everything my family wanted and needed me to do. That in itself, is THE BEST "side effect"possible! I would have died knowing THEY knew I did everything I could for them. And so...as it goes...you always have my vote of confidence! And votes from so many! So, sew, so sew...<3

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