Hey guys,

First, thanks to everyone who has been Facebooking, texting and calling to check in, I really appreciate it. I can tell when a lot of people check in that it’s time to update the blog as people are genuinely interested in where I am on this long, involuntary journey. Sorry it’s been awhile, it’s a mood thing and I didn’t want to write when I was super cranky but tonight I figure, why not. It’s not all peaches and cream so here you go.

Today, I had my 5th Taxol infusion of 12.  Combined with that other kind of chemo, it’s my 9th out of 16 infusions.  It feels sometimes like I’m chasing a moving light at the end of the tunnel, but I know at some point I’ll get there because my badasses keep telling me to hang on. So I’ll just keep putting one foot in front of the other and trudge into Sloan Kettering every Friday until I’ve hit the magic number.

I’ve talked in the past about this journey being a mental game as much as it is physical and emotional.  Today was one of those days. First, I don’t want to be there to begin with, but second, they are always behind for chemo infusions download the volkswagen manual. Sometimes they are over an hour behind, sometimes there’s a bigger scheduled gap between your visit with the oncologist and the pharmacy mixing your meds and you getting into an actual room for your treatments. Those are planned gaps and you can leave and get lunch or poke around the boutique or do something, but at least you know about the wait and you can plan for it.

Today wasn’t one of those days, it was a trainwreck that ultimately ended with me asking to speak with the person who does the scheduling because clearly they don’t understand what goes on with patients who are waiting hours to get in there and they need to do something to fix it. It is all the time, every week, patients lingering in the waiting room, napping, eating, reading, pacing and quizzing the front desk people about “where they are in the queue” to get a suite. Mentally you gear yourself up to get in there and get your infusion and get out…and sitting around for hours on end waiting just adds to the frustration and makes people miserable.

Today my appointment was set for 11:45am. I don’t have a problem if they are backed up 30-45 minutes, I get it, things happen. But today they were 2 HOURS AND 45 MINUTES late herunterladen.  I left my house at 10:45am to get there on time, and didn’t get seated in a chemo chair until 2:30PM.

And what made it worse was when I’d check in with the front desk, the guy told me at 1pm that my meds were mixed and ready and it should be “15 minutes or so,”  Then when it wasn’t, I checked in with the woman popping her head out of the suite door calling patients in. She said she’d check and let me know when I’d be called. She never came back. I then cornered another woman who was heading into that area, who by the way, doesn’t have a thing to do with chemo infusions, if she could check. She said she’d ask for me. Finally the other woman came back and said I was next, a nurse was getting my room ready and it shouldn’t be long, yet 45 minutes later I still wasn’t called & she was nowhere to be seen.

So here’s the thing with hospitals and everything in life. You can either sit there and take it, sigh loudly like some, take another nap, send someone out for yet more food, or call and complain to a friend.

Or you can get up, speak up and demand they get their act together.

So that’s what I did. I huffed up to the front desk and asked who was in charge of setting the appointments and asked to speak with that person reiseführer herunterladen.  I was told it was an admin person but she wasn’t sure who, but she could have “Alice, the patient advocate” come see me in my room when I get there.  I told her I didn’t have a room and was waiting for over 2 and 1/2 hours. Her eyes got as big as saucers. She called back to the suites again and they told her to send me to room 19.  She told me Alice would immediately meet me in there.

I got to room 19 and there wasn’t s a soul in sight.  No nurse, no tech, no Alice.  I saw the weekly paperwork I have to fill out for a clinical trial I’m in regarding neuropathy (burning, tingling, pain) in my fingers and toes, and took it upon myself to get the show on the road and start filling that out. The post it on the front said “Deliver for 11:45am appointment” to which I passive aggressively scribbled out and wrote “NOT SEEN UNTIL 2:30PM!” It was a start radio.de zum herunterladen.
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The nurse finally came in and made the mistake of saying nicely, “So, how are you today?”  I lost it. I told her about my wait time and my frustration and how it messes up everyone’s days and how I don’t understand why they don’t tell patients about the wait and let them decide to sit there or go out, etc spiele herunterladen auf handy.  I felt bad after I rambled off all my misguided aggression, it wasn’t her fault. But she looked at me and apologized and said she understood. She has heard it before and totally gets it. It’s not fair to the nurses they get the brunt of patients’ frustration and I told her that.  I apologized and we started the process of looking for a good vein.

Sidenote: Last week some chemo apparently “leaked out” of the vein they used in my hand and my forearm swelled up two days later. According to the emergency resident on call, that’s common, but since it was still sore this nurse wanted to move up my arm a bit and after 15 minutes of whacking at my arm, clenching a fist and using a heat sack, we found a decent vein to use. We were on our way.

But I wasn’t letting go of Alice. The nurse knew who I was referring to and said she’d also let Alice know I still wanted to talk to her.  I think she was more than happy to give me someone else to vent to. About 45 minutes later, after the Benadryl kicked in and I was loopy and slurry, Alice walked in the suite, pen and paper in hand what is herunterladen in english. Apparently she knows the drill.

I have to say I’m normally a pretty good patient. I don’t stress, don’t ask for much, understand how busy everyone is and don’t ever really complain.  But I am also the kind of person who needs to speak up when things are done wrong and the results of that affect people’s lives, especially my own.

So I let Alice know of the delay, of the wait time for several other patients who were furious in the waiting room and how no one is communicating with us about it and giving us options to work around it. We just had to sit there, held hostage, waiting and hoping that every time the door opened it was for one of us.  She sat there wide-eyed and said “I am flabbergasted, I don’t even have a response. That’s not acceptable, and I will definitely talk to the managers about this.”  I also told her about a few other things that they could improve upon (control freak anyone?) and she agreed with my suggestions adobe reader mac download kostenlos deutsch.  I had her trapped at this point and I wasn’t letting her go until I got it all off my chest.

Because here’s what they don’t understand. Everyone in the waiting room is sick, to varying degrees. They are fighting breast cancer. They are tired and bored and hungry and nauseas, in physical pain from previous infusions, sucking down water to combat dehydration from whatever cocktail of chemo they are getting. They are making multiple trips to the bathroom waiting to get called. Some are sitting in wheelchairs with oxygen tanks, slumped over doing their best to wait it out, looking like they are at the end of a very long, hard road. It’s emotionally draining to look at some of them and wonder, “Does she have what I have? Is she triple positive, or triple negative? Did her cancer metastasize? Is she HER2 positive? Are they out of options for her?” You have your own battle, but you wonder where her battle started and how it will end and can’t help but see your own possible future in everyone else sitting in that room fortnite herunterladen handy.  It’s bad enough to be there for 20-30 minutes waiting, but 2 hours and 45 minutes is enough time to jump like an Olympic level trampoliner to a thousand and one horrible conclusions.

At one point during our conversation we saw nurses running frantically by my suite towards the waiting room, then back again, then again towards the waiting room, all with concerned, panicked faces.  My nurse came in and said that a patient had fallen down in the hallway of the waiting room. I joked, “Well that’s one way to get some attention, she probably just wanted someone to see her and get her in a room! I’m going to try that next week.”  She didn’t think it was the right plan.

I don’t know yet what changes, if any, will be made. But it’s not right and it’s not fair to all of the patients to overload the schedule when there’s not enough rooms or nurses to accommodate it empire earth 1 free download full version. The brunt of inadequate scheduling should not fall on the shoulders of the patients who are simply trying to keep their bald heads above water and get through the day.

So next week when I’m in the waiting room for my 10th infusion, if the wait time starts to creep up, I will channel my inner Norma Rae and without a doubt again I will get up and speak up, for all of us.

QUICK UPDATE: A few people have asked how this could be since Sloan Kettering is such a top notch facility.  I felt I should clarify. It IS. My surgeon and oncologist are two of the smartest women in breast cancer medicine and their nurses and even the billing department are on top of everything.  If I had to go this far all over again I’d pick each of them to go along for the ride.  The only problem I’ve faced is this issue of epic delays trying to get chemo saliorel. It is most likely caused by the sheer volume of patients who are there, but that doesn’t excuse it. They need to expand, group up patients for infusions, add more suites or start doing some night sessions to accommodate the number of patients. Something.