So Far, So Good

My apologies for the delayed update since the longer I go between them the longer they get! My last post, August 3rd, seems forever ago. I’ve already had eight doses of my new drug regime since then…let’s catch you all up.

There was a little confusion around the first appointment on August 14th. I hadn’t been well briefed on what would be transpiring other than I was starting my meds, and I have to take some responsibility for that since I never ask questions.

Upon arriving my coordinator came to fetch us since she’d moved my app’t to The Henri and Belinda Termeer Center for Targeted Therapies. On the walk down she was chatting away when the phrase “…since you’ll be here all day,” caused both Satin and I to gasp…”What do you mean all day?”

Poor Satin, my escort for Wednesday’s app’t, ended up toiling away at MGH for eight hours with me. Thank goodness she was there to entertain me though. I would have been a lot less easy going about it had she not been present to keep me smiling and laughing.

Once we had that little detail ironed out things moved along to meetings with my oncologist’s PA, my research RN, and the afore mentioned coordinator. I had several ECG, and enough blood drawn to fuel my own bank.

The lengthy app’t was due to a four hour window between labs. Fortunately it’s only the 1st dose that requires it. To while away the hours Satin and I visited the roof top garden, which is lovely. The view is out across the Charles River Basin and takes in the Boston skyline…stunning.

To Make a Long Story Longer

I discussed the drugs in my last post, what the intended affect is, and the possible side-effects, so I won’t reiterate those. Nothing much to report, so far so good. My blood work yesterday was nearly normal, just a very slight drop in white blood cell, and my blood sugar went to 133…but that leads to another story I’ll get to in minute.

They seemed surprised it was that high. I eat a Keto diet and we expected it would keep my blood sugar down. That wasn’t the first surprise we had yesterday or the last.

Just When I Thought I Had It All Together

I was feeling all confident and spunky, intending to drive myself in to Boston for the first time since I started treatment. I was about to depart, and the last thing I do before leaving is pack my drugs in its ice pack, zip it closed and grab my tote bag.

I head out to the garage, get in, and the brake won’t depress, and the engine won’t turn over, and lights–I’ve never seen before–pop on.

Are you fucking kidding me?

SOS call to Satin, SOS call to Paul. Satin wins? She rushes over to get me. We arrive in Boston a half an hour late. Coordinator assures me it’s no big deal. I am ordered to relax. Grumble, I hate being late and I hate dragging Satin away from her niece and nephew day (and yes I know you are happy to do it… thank you, I love you).

Once settled into my room with the staff, I regale my PA, RN and Satin with last weeks hi-jinx.

Oh. No. You. Don’t.

The previous week Donna had suggest I try Excedrin for the migraines I’ve been plagued with since May. Lillian and I pick some up next morning, and after that days app’t we settle in at home with lunch. I read the box aloud to her, scoffing at the ingredients.

“Acetaminophen, oh that never works for me. Caffeine, that’s the same amount in my tea. Ah, aspirin. I haven’t had that in years. Maybe that will work?”

Feeling skeptically hopeful, I took two in hand and, bottoms up! Two hours later I’m sorting laundry, and I realize I do not have a headache.

It’s a miracle. Not only do I not have a headache, I don’t have any of the lingering ache and stabbing pain that I’ve had relentlessly experiencing since May.

I marvel at this new turn of events. Bless Donna, she is a genius, I will never doubt her again. Then, mid-detergent dump, I pause…Hmm, am I peeing?

Why yes, yes, I am. (No worries though ladies. If you have not tried Icon undies for bladder leakage or Thinx period panties I whole-heartedly recommend them).

My lack of bladder leakage fear aside…what fresh hell is this?

This is not on the list of side effects for ANY of the drugs I am taking! But, I do have a little trouble with caffeine and urgency. OH. NO. YOU. DON’T.

Life? I hardly think that curing my migraines is a fair exchange for the loss of bladder control. In fact, given everything else you’ve thrown at me, this seems patently unfair. This is totally unacceptable. And it end there. I haven’t had any problems since then.

That is the story I relate to the ladies. I had them rolling. It was very funny. Donna couldn’t wait to tell Dr. Juric just so she could hear his laugh (he’s a hearty laugher). IShe asked if I’d take the Excedrin again. Yes, and where my Icon undies.

I like these people a lot. Which is good seeing as how I might be stuck with them for the rest of my life.

Who Left That There?

Satin and I depart, leaving behind an air of mirth. We head to Medford for lunch at Tenoch, a Mexican place. It was delicious. We decide to get some work done at Battle Ground.

While I am sitting here yesterday (as I am now) I am thinking of earlier and what a coincidence it was that my car was dead and I had to go in the house where I found my drug bag sitting on the counter.

What? I know, I said the last thing I did was zip the bag, grab my tote, and leave, but, as I discovered as I waited for Satin to drive me to Boston, I had not put the bag in the tote. Sigh. What the hell is wrong with me (rhetorical question at this point)?

Not So Fast

I was here yesterday at Battle Ground, recalling that incident when a fricken light bulb went off over my head. The last thing I did was take an Ibuprofen.

Ohhhh, Noooo!!!

Do you know what you do when you take Ibuprofen? You eat something. I had 6oz of almond/cashew milk.

Ohhhh, Noooo!!!

What have you already learned about my day? My blood sugar was a bit higher than expected…because it’s supposed to be a fasting blood test. Guess what I did last week too? Ate before my labs.

I have been fasting 5 days a week since April. What are the effing odds the one day of the week I need to have been fasting that I have eaten something? Two weeks in a row?

For crying out loud. Now, I have to email them and confess my sins.

Coordinator laughs at me, and once again orders me not to stress. But still, screwing things up is getting tiresome.

Tying Up The Loose Ends

My car battery, was just old, dead and unrecharable, AAA replaced it. NBD.

The blood sugar wasn’t high enough to trigger a protocol response. PA decided to wait and see where it settles…I promise I will be fasting next week so it should be better.

One more thing, I didn’t reveal this widely because I was having a hard time processing it, and I didn’t want anyone to be overly concerned.

Nothing has changed. My treatment is still the same, my expectations for positive results are still the same. The only thing different is a more accurate count and placement of the tumors.

The CT I had August 2nd revealed about twice as many tumors as we previously been aware of. Nothing was done incorrectly, each test is unique and has different abilities to see the tumors. I wasn’t surprised by the results since the previous reports alluded to other tumors. But I’m human, it was scary to read I have twenty-six+ tumors rather than the thirteen+ we’d been briefed on.

As I said, this changes nothing. All the tumors are being treated by my drug regime. Overall, I feel pretty darn good. I might be experience a slight change in the taste of food, and a dry mouth, jury is out. It’s hard to tell sometimes if what is occurring is a side effect or the Mexican food I ate for lunch.

My spine seems extra achy today, but I didn’t sleep well last night. Those of you who live around here likely experienced the acrid smoke from the N. Andover fire. It kept Paul and I up all night after the smoke settled right over our neighborhood,

I think that’s enough for now. I will try to be better about updating so you don’t end up reading another novella length post.

Next week I have my second injection of Fulvestrant, an eye app’t, and two days of lab work. Best of all though is Kayla and Chris’s wedding is Labor Day weekend and Declan will be wearing a kilt! I’m sure we’ll all die from his adorableness.

Love to all.

What is Writer’s Block?

I’ve never acknowledged having writer’s block because I don’t believe it is a thing. At least not a single problem to be overcome, but more of catch all problem for what keeps you from writing.

Think about it. Can you literally not write? Forget the staring at a blank page and not knowing what to write, but the actual mechanics of it. Of course you can write. Whether you type, use a pen, or dictate, the words will come out of those instruments at your direction.

The rub is what words come. I’m a firm believer in it doesn’t matter what you need, or want to write, just start and you will find your way there.

Write you shopping list, a wish list, a list of places you’ve been. Write out a poem or song you know by heart. Just write and keep writing for 20 minutes non-stop. Walk away. Come back tomorrow. Write about politics, about your opinion on a world crisis, on why you should be able to eat chocolate cake for breakfast. Write for 20 minutes then stop. Come back tomorrow.

Everyday, until you hit it. The day you can’t stop at 20 minutes. The day you figure out what it is you want to write. It will come. Writing is a practice you have to show up for and exercise whether you feel like it or not. Whether you have something to say or not. Whether you feel sick or tired, or are too busy. Show up everyday, for 20 minutes and practice being a writer. Banish writer’s block by writing.

How to Host a Book Launch Party

I had the privilege and honor of introducing and interviewing my friend Satin Russell at her first ever–book launch party. Never having hosted a book launch party before, she relied on her experience as an audience member to inform her own. It came off without a hitch, was entertaining and helped spread the word of her coming works.

How Satin Threw a Book Launch Party

Like writing styles, you have to find the method that works for you. Start by choosing a venue that suits your personality. Satin’s was at the small bistro Crave, in the charming town of Amesbury MA, which is noted for it’s thriving art community and plethora of downtown eateries. Crave’s warm and inviting ambiance with a eclectic selection craft beer and small batch whiskeys reflects Satin’s easy going, fun nature. The very knowledgeable bartender introduced us to some fine tasting bourbon and new whiskeys-added bonus for us cocktail lovers.

Typically, a book launch would occur at a book store, your home or rented venue, but thinking outside the box served Satin well. Crave graciously open early 12-3, before their dinner service. They even donated a gift certificate for the give-away. It proves-never be afraid to ask. The venue earned new customers, well worth their time accommodating this event.

Invite family, friends and fellow writers who will chat, nosh and take great enjoyment in bearing witness to your success. Surrounding yourself with those who love and support you is a smart move for a launch-if no one else show up at least you’ll have fun. Though this is a celebration don’t waste this opportunity make sure you publicize it. Market your launch event. Send out press releases, invite local media, and put up notices-everywhere.

Decide how you’ll actually run the event. Satin chose to have me interview her. This allowed her to relax and mingle before hand since she was nervous about standing up there by herself. She started with a reading then we interspersed the questions with a few short excerpt introducing the audience to the characters. We’d written the questions in advance, refining until we thought we’d covered everything the audience would be curious about. She is an eloquent speaker, at ease and funny. She ended with taking questions from the audience. I don’t think it could have gone any better.

Self-publishing isn’t an easy task.  It takes guts and faith in yourself. Satin’s commitment to pushing through the doubt, embracing all that you need to learn–hiring an editor, a cover artist, a format specialist, and marketing, impressed all of us.

I hadn’t thought much about throwing a book launch party before–my work is not quite ready for prime time–but I’m glad I got to see first hand how it could be done. Since then I’ve done a little research. Here are a few good resources if you are exploring how to host your book launch party.

Bookbaby’s How to Throw a Book Launch Party That Isn’t a Waste of Time

Writer’s Digest 9 Steps to Hosting a Book Launch Party

The Book Designer’s 12 Tips for Successful Book Launch Parties

Tiana Warner’s The Complete Book Launch Party Checklist

NaNoWriMo Preparedness

It’s NaNoWriMo preparedness time!

November kind of sneaks up on you, so fair warning, as of today Oct 4th, NaNoWriMo is a mere 4 weeks away.

For you local writers seeking a state of preparedness that might stave off panic come November 1st, we have pre-NaNo write-ins three weekends in October.  Use them to plot, develop ideas, or characters, bounce questions off the group, get website or book recommendations, pretty much anything having to do with novel writing-you ask we’ll do our best to answer.

For my web-based writer friends I recommend these resources to help you prepare. Check out the WriNoShore website, Wednesday Woo posts for even more writing links.

Obvious, but chock full of helpful information to get you started is NaNoWriMo’s own website,

http://nanowrimo.org/forums/writing-101

Chuck Wendig’s books and blog are a favorite, be forewarned he is loose with the crude language, and I love him for it.

http://terribleminds.com/

http://www.livewritethrive.com/

An interesting search engine I’ve just started exploring,

http://hiveword.com/wkb/search?q=plotting

http://www.writersdigest.com/writing-articles/by-writing-goal/write-first-chapter-get-started/novel-in-30-days-2011

 

Are you new to NaNoWriMo?

The WriNoShores are a regional writing group that germinated and grew from our NaNoWriMo experience. While we have a distinct identity from NaNoWriMo for the month of November  we are devoted to participating in NaNoWriMo as the North Shore region of Massachusetts.  We’ve discovered over the years that each region has their own way of doing things, though the basics are the same.

The ML (Municipal Liaison) arranges for places to hold write-ins during the month of November, ours has NaNo Prep Write-Ins several weekends in October to help one another with plot ideas and familiarize newbies with the process. We have a variety of write-ins held in libraries, coffee shop, tea shops, and private homes and attended by anywhere between 2 to 20+ writers.

I can’t stress enough how productive our write-ins are. We are very dedicated to helping you reach you word counts which we do by holding word sprints. Word sprints are 20 minute focused writing sessions, often back-to-back with fifteen minute breaks between sets. It is amazing how the energy of all those writers pounding out the words helps you concentrate. It is rare that someone doesn’t find this event works for them, truly, most are pleasantly surprised.

As anyone in our group will attest, we are convivial, but serious minded, kind, accepting, and helpful. We strive to be productive, yet balance that with copious amounts of tea, coffee, and chocolate, administered as necessary.

If you have any questions don’t hesitate to ask, here or on our NaNoWriMo regional forum.

 

 

Lily Myers – “Shrinking Women” (CUPSI 2013) – YouTube

Amazing poetry about the messages women receive.

 

Lily Myers – “Shrinking Women” (CUPSI 2013) – YouTube.