Working Out The Kinks

 

No filters, no Photoshop, just a clean face, tired eyes and a "wait and see" attitude.  Last treatment, this day was a good day and then it all went to hell in a handbasket the next.  I am extremely hopeful that the adjustments made to my protocol yesterday and the resources I have on board now will result in a better after party.

Yesterday started very early and my friend Theresa and I made it to my appointment in plenty of time.  This in spite of the fact that my maps on my phone insisted to taking us to a location different than the one she was told.

First thing was labs, not my favorite thing, the tourniquet DOES NOT need to be that freaking tight....my veins stand up and salute and you simply don't need to work that hard for them.  But, the good news here is my lab were wonderful yesterday......so much improved over the week before. 

The nurse practitioner (who I love love love) listened to me very intently and set me right on some things I had assumed were responsible for my neuropathy and made adjustments to my treatment that might improve that particular situation.  We shall see.  Everyone at Highland is very engaged with their patients and so very very kind and caring.  You actually feel like they see you a real live human person in need of love and care and not just a name on a chart.

We had one minor hiccup where the IV dislodged and this led to a leakage of chemo under the skin.  I noticed it immediately (so it was a blessing I wasn't asleep), but I made them aware and they removed the IV, relocated it, drew a lovely Sharpie circle around the reddening swelling area and then gave me a series of 6 tiny little stinging shots around it to maintain the integrity of the healthy tissue.  That was less than 5 minutes as they all hands on decked it.

We've discussed a port and I am not opposed to it but it would involve at least 2 additional appointments to accomplish this and they don't like to do a treatment on the same day a port is installed so some thinking to do there.  I know it would give my poor old beat up veins a good rest and we all probably need that.

Because of the rash I developed after leaving the hospital (likely due to the send home antibiotics) they want to lay eyes on me next week as well.  So I will utilize that appt to get labs done and hopefully they will schedule my next 2 or 3 rounds of treatment then so I can start the call of "drivers of needful people."

I came to realize early on that so much of my own fear of this diagnosis stemmed from walking into a clinic and seeing people who just looked so very very sick and hopeless.  It is truly a soul crushing experience.  I've thought a lot about this and about the actual people I know who have faced this.  I have realized that for some this is simply the best they can do, some don't want to try to do better and then there are some that want to take that diagnosis and drag it by neck and kick it every chance they get.  Those people send a very clear message, "you may get me but it won't be without a fight."  I am hoping to be one of those.  While I didn't wear the "hair" yesterday (because those days are all about comfy clothes, warm blankets, tasty treats and mind engaging activities) I did my makeup, dressed brightly and wore my dangly earrings under my fetching little head cover and hit the floor with jokes and smiles.  I got a few back in return....I feed on this.  I even coaxed a tiny smile from a very dour little gentleman who head covering I praised (it was a Razorback themed one) and he took a beat and then told me he liked my fuzzy socks.  They were black, grey and white argyle (totally matched my bright Aqua top with all the colorful embroidery) and I told him I was trying for a fashion statement and he grinned.

I will need help with this because by nature I am simply NOT fancy.  I'm messy and mostly unconcerned with how my appearance is perceived.  My statement has always been "I just don't want to scare little children."  But, during this passage I want to try harder to look as happy and presentable as I can....so you are welcome to hold me accountable for this in public.  But if you come here I most likely will not be the picture of womanly loveliness.  At home, I am as real as I can ever be.  Home holds acceptance for me, my dogs like me, my furniture likes me, the walls embrace me and God sits with me and holds my hand.  And the things of home are willing to hold my pain, my tears, my fear and my uncertainty and not reveal my secrets.

It was a long day yesterday and I left my furry kids at the boarders overnight again but they are now home enjoying their weekend company of their human brother TJ and his little sparkplug of a fiancee Angela.  (The Angela he calls her - I sort of love that)....more I love the positive changes she is helping him make for himself....this is what true love looks like....encouraging someone to be the best version of themselves all the time.

Everything in this life is a blessin' or a lesson.  I'm okay with being both because I think a lot of blessings come from some pretty hard lessons.  Today I know these things:  My Daisy girl is having her birthday today in doggie Heaven.  Headwraps can be a good thing because people don't naturally assume you are sick and bald under there, sometimes they think it is a cultural choice.  People need encouragement and something positive to see.  And people need to be seen as more than what they are enduring in life, they need to be seen as someone trying to put the best face they can on a very hard thing.  We are imbued by God with the ability to be a Job in life and to not be defeated in spite of some very hard truths spoken very loudly.

So

Be grateful

Be mindful

Be kind

Be soft and open

Be positive

Be "pretty"

Be courageous

Be an overcomer

Be YOU - there is no one else like you.

Love and light on this day of Independence!