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Showing posts from June, 2014

A Much Needed Vacation

**This post was transferred from the now defunct "The Long Ease" blog.**

On Friday the 13th, after a short morning at work, Ryan and I loaded up the car and hit the road. We've been together for nine years, give or take, and we have never had a true vacation together.  I've visited him on the road countless times and in countless cities, yes, but vacations involving sound checks are hardly vacations.  We've also done some weekend long trips to attend weddings in cities like San Francisco, Philadelphia, etc. as well as quick trips to Denver & Kansas City back when we were thinking about moving... But, again, these were never truly "vacations" in that there was no possibility for relaxation. Just rushed plans that had to coincide with a complete lack of vacation time.  After the year(s) we've had, it was time...
I'm not really sure why I chose The Adirondacks.  It's where I "grew up", or so I always say when people ask about my h…

Three Things

**This post was transferred from the now defunct "The Long Ease" blog.**

Just wanted to pop in and say a couple things:

1. I just took my last antibiotic a moment ago.  I am feeling pretty good.  Hoping it lasts through the next week and our upcoming trip to the Adirondacks!

2. The Survivorship Support Group at The Gathering Place is really pretty excellent.  I enjoyed this month's session on Tuesday night immensely.  Got to talk to some lovely people, finally got to officially meet a familiar face from other programs we've both attended there, got some accidental great insight from a kidney cancer survivor about something that's been VERY on my nerves lately, and once again really "GOT" how much help is needed in the Survivorship Community as a whole.  Which brings me to...

3. We live in a time when more people survive cancer than die from it.  And yet, support for survivors and our unique and myriad problems is seriously lacking - ESPECIALLY in the AY…

A Quick Update

**This post was transferred from the now defunct "The Long Ease" blog.**

It's funny, I really had not intended for this blog to be a chronicle of new health issues, exactly, but it seems that right as I started it, all this craziness started getting crazier.

But I don't want to leave anything hanging, so I just figured I would pop in and say that I do seem to be recovering quite well from the Emergency Room excitement.

All of my blood tests came back perfectly normal, so the infection was likely all that was causing all that pain and high fever.  Crazy.  I couldn't get a gauge on whether the doctor seemed to think the infection was actually in the bladder / from the surgery, or just somewhere unknown in the urinary tract.  Doesn't matter, I suppose.  Knowing won't make it have sucked any less!

Anyhow, I am halfway through my antibiotics and 5 days away from a vacation that is STILL HAPPENING!

Can't wait.
Xxo, Phoebe


Back to Work!!!

**This post was transferred from the now defunct "The Long Ease" blog.**

I'm headed back to work today.

Yesterday's follow-up at the doc pretty much told us this is probably nothing serious.  Looked like some growth had happened in the urine culture, likely indicating nothing more than a UTI.  I got another series of pokes and listens and was sent to the pharmacy to pick up a week's worth of Penicillin which I have to take 4x a day.  She hoped that by today, it might bring my fever down and it seems to have done that.  Back down to 99ish this morning, which is pretty normal for me, so I'll take it.  And I'll be calling for or expecting a call with the results of the other tests sometime today.  The pain has settled down to being manageable with just the Tylenol and when I got up this morning, I actually stood up straight without wincing.  So progress is definitely being made!

The hard part is definitely just the difficulty in all of this.  The never knowi…

A Trip to the E.R.

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**This post was transferred from the now defunct "The Long Ease" blog.**

Yesterday was one of those days - the perfect example of my state of medical weirdness.

I woke up feeling perfectly "normal," took a shower, got dressed, went downstairs to let the dogs out, and felt, quite suddenly, an unfamiliar and intense pain in my lower abdomen.  It was somewhat reminiscent of feeling like super-constipated, except that I wasn't.  But I definitely didn't feel well enough to eat, so I packed a lunch and headed to work.

I could not get comfortable at my desk.  The pain was getting worse.  I started to feel cold.  Put on my emergency work hoodie.  Still cold.  Busted out the space heater.  Kept working.  Got a phone call from a vendor.  Was doing fine and then, 5 minutes into the call, I was sweating.  Dizzy.  I told the guy I had to go, hung up the phone, fell to the floor, and threw up in my wastebasket.  The freezing went away and I was pouring sweat and trying t…

Post Follow-Up Follow-Up

**This post was transferred from the now defunct "The Long Ease" blog.**

My appointment with Dr. Avallone (Urology Oncologist) today was fucking stellar.

Not so much in that I am doing well, because honestly - I'm not.  But because he's so completely awesome and so committed to figuring out how to help me.

Here's the highlights:

My surgery last month removed "stones and necrotic debris" left from the previous surgery/biopsy I had on my bladder last fall.  Basically, it never healed.  The radiation damage is too concentrated and too severe.

The reason I was in such GOD-AWFUL pain and was bleeding so much from the catheter I was left with for 5 days following the surgery is that the balloon that hold the catheter in place was basically right ON the worst part of the radiation damaged area of my bladder.  Ouch.  No wonder it took me 10 minutes to walk from the parking lot to my desk the two days I attempted to go to work with it.  Sheesh!

I am back on the …

Today

**This post was transferred from the now defunct "The Long Ease" blog.**

So much going on today.  Most exciting is that today is my first day working my newly negotiated schedule at my job.  Since I started there, I'd been working 7-4:30 M-Th and then in the beginning, just in the mornings on Friday.  But as we got busier, Fridays became til 3:30.  The overtime was nice, but the reality that working 9-1/2+ hour days was not easy for me became more and more apparent after my most recent bladder procedure.  By 2 or 3pm, I was ready to crawl under my desk and pass out.  My belief is that it had a lot to do with the fact that in order to be signed in at work by 7am, I was needing to get up by 4:30 or 5am.  Which, for someone who struggles as much with sleep as I do, SUCKS.  And no, I don't have a long commute, but my "post-cancer healthy lifestyle" is pretty time-consuming.  Every morning (when my bladder isn't being a jerk) I do a 20 minute work-out on my …

National Cancer Survivor's Day

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**This post has been transferred from the now defunct "The Long Ease" blog.**

I've been moving toward this new blog for a minute now.  A blog that is not just about being positive in the face of cancer.  But a blog that is about where I am NOW.  A blog about survivorship.  The awesome parts AS WELL AS the downright shitty parts.  A blog where I feel comfortable going back to the rawness and the realness of the original Phoebe's Stupid Cancer blog.

I want to write again, but for a long time, the "Positive" part of Positively Phoebe would just flat stop me every time I'd sit down at my desk and open up the blogger window.  A lot of people encouraged me to stick with that blog and that title, and no offense is intended toward those who felt that would help me.  But the truth, for ME, is that I was only being positive for other people for the past several months.  I had created a persona and I received genuine disappointment from some when I actually expres…

Moving on, though perhaps not forever...

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for the time being, you can find me here... www.thelongease.com