Today has been a crappy, shitty, shitty day.
It started with PT, which I love going to — but they really do beat you up badly. Julie made no exception today since I won’t see her again until Monday. She really went to town on me. You could still see streaks of red hand marks all across my chest even after 15 minutes of icing. I just keep telling myself it’s all worth it and I don’t want my spacers getting scar tissue etc. So I get through it and I even do my exercises at home — as much as I’d rather skip them and take some drugs to dull and quiet the pain instead!
Before I even left for PT this morning, I called my plastic surgeon’s office to have all of my meds refilled — I am running precariously low on all fronts. So I left a very detailed vm for the nurse and was surprised that I didn’t hear back from her by the time I was out of PT. I called her again, and again, and again and kept getting her vm. Then I called the main number and they F’ing transferred me to her vm AGAIN. WTF? I decided to leave her a second message and this time my voice is shaky. I am losing it. I can’t hold it together. I fucking have cancer and I need my medicine. Is it so much to ask that you just pick up your vm, call in my refill and let me know that it’s done?
Then on top of that, I call my chemo doctor’s office. I still haven’t heard boo from them since our initial consultation — which is fine since we are awaiting the oncotype test results. BUT STILL. He told us that he tentatively wanted to start me on Tuesday, December 18th — that way my worst days would be over by the weekend and my off week would be Christmas week — when he would be away on vacation. Well, tick-tock, tick-tock. Shouldn’t somebody have called me by now to put something on the books for the 18th? Why is all of this shit incumbent on me to do?
So I call to inquire and am told, “well, we only have one spot left for the 18th and it’s late in the afternoon — I don’t know if that will be enough time for your infusion — can you do Thursday the 20th instead?” My heart literally stopped and tears started. I tried to keep my composure as I informed the coordinator that, no, Dr. Smith assured me I would be a Tuesday patient because I want me weekends to be sick-free (if I get my infusions on a Thursday, that means my sickest/worst days would be Saturday and Sunday — with a Tuesday infusion, the worst will be Thursday and Friday — this was a calculated choice on my part so that I can get together with my friends over the weekend and retain some semblance of a normal life). AND I’ve scheduled about 3 weeks worth of PT assuming a Tuesday infusion.
This may sound totally stupid and trivial to the rest of you — but cancer has become my full time job and it’s insulting to me that nobody seems to be listening to me at all lately. She could tell I was exasperated and at my ropes end so she gave me the 1pm on Tuesday slot. But I can’t shake my annoyance that I am making all these outbound calls — why should I have to HOUND people? This doesn’t seem right.
As if the above wasn’t bad enough, stupid PAMF keeps double billing me for shit. So we are spending countless, precious moments going back and forth between the insurance company and PAMF to figure out who has their head further up their ass (it’s PAMF, by the way — this is, by no way a reflection on any of the doctors or nurses there — just their billing department).
Oh, and I’m still waiting on Stella & Dot to complete their portion of my disability paperwork. We’ve sent a number of follow up emails, yet still nothing. Awesome, thanks.
So then I call Paul. Who doesn’t pick up. I call him back 5 times in a row. He texts me that he’s on a call and can’t talk right at that second. I officially lose it and his text pushes me over the edge. I text him back that I am having a nervous fucking breakdown and he damn well can, and better talk to me right now.
Needless to say, Paul came home from work to help me out (he’s a good egg). I popped a valium and he called the insurance company to get all that stuff squared away. We tried the number for my RX refilll about 5 more times and kept getting vm — so then I had the brilliant idea to call Jennifer Glover (nurse coordinator extraordinaire) to help me get the refills since she is at PAMF. She was like a breath of fresh air. When she picked up the phone, I simply told her what I needed and she said she’d get it taken care of and would call me back. At that point I actually cried. I was so thankful. She also asked after my oncotype results which made me cry more since we are still in limbo on that front.
Which leads me to my penultimate rant. I decided to leave another message with my chemo doctor’s office asking Dr. Smith to call me back today. I am feeling really uncomfortable with my treatment plan right now. I haven’t spoken to him since the day of our initial consultation I had to make my own appointment for the 18th, and I feel like I am the only one looking out for me. I specifically chose his practice because I was told I wouldn’t be “just a number.” Well, I sure as fuck feel like just a number right now. I’m the one with cancer for fuck’s sake. Why am I chasing all this other shit down?
I am so FED up right now. I hate cancer, I hate being sick, I hate being at the mercy of other people. I am used to just taking control. This really isn’t working for me. I can’t relax until all of this is taken care of and I still don’t know when the hell I am going to start chemo.
OK, final rant — we have lovey new neighbors moving in upstairs. We truly do like them and are super excited to get to to know them better. They seem very normal and cool. But, as any new owners should — they are doing some minor construction before they actually move in. Nothing too crazy and they’ve been uber conscientious about our situation (which makes me love them even more). But, when I got home after PT and all these redick conversations I had — I just lost it. There were jackhammers and all sorts of crazy things going on overhead. I totally freaked (read; was yelling really loudly) when I was talking to Paul (before he got home from work).
Jon, if you are reading this — don’t worry — all is good, I just had a really bad day today. We aren’t mad at you for wanting to make your place perfect before moving in. I want that for you and your family! And thank you for continually checking in with us on schedule. Today was just a bad one. So thank you for bearing with me 🙂
Good news about me. Is I always try to turn my frown upside down. As I write this, Paul is headed to Walgreens to pick up my meds AND we are meeting Tom Yu, Missy Gac and Tim Stark tonight for sushi at Umami (sp?). I’m sure they will be able to lift my spirits in a much needed way.
I feel obligated to add this post script: Dr. Smith called me back before I hit “publish” on this post. We had a heart to heart. I told him exactly what was on my mind, what happened that bothered me, what I was not OK with and what needs to be done better going forward. I asked him not to yell at any of his front desk people, b/c none of this was their fault. We had a very good chat (I assume he’s used to getting sobbing calls from crazy cancer ladies, so he handled me with grace). I am feeling a lot better and feeling solid in my choice to go with him once again. We should have my oncotype results my midday Monday and then we’ll meet in person or talk on the phone and come up with the final plan. I think Dr. Smith now has a sense of who I am and how I operate. He didn’t before — but now he does 😉 What can I say? I am who I am. ALSO, Stella & DOT, just emailed me my disability paperwork with their stuff completed. There just may be a happy end to today after all!
See, I told you, this blog will not just be all sunshine and rainbows. This is the real deal about what cancer patients go through. And, I’m figuring I’m not the first person in the world to have experienced a day like this. Signing off for now. My next posts will be more uplifting I promise. I just had to vent. I feel better now.