Friday, August 5, 2011

A Little More than Vaguely Frustrated

I left the oncologists office feeling encouraged and like I was beginning the path the end of this ugliness.

I now feel like I'm still right at the beginning of it and I'm frustrated.

I called the oncologist yesterday to get the results of my breast mammogram. My hopes were that this would pin point where we need to focus surgery and treatments.  Instead, it left more questions.

In the oncologists words.... "This is the vaguest report I've ever seen. I read it. I read it again and then I reread it." 

So, basically, there is 'something' in each breast. They can give measurements (one in the right is 5 mm - but that was all I remembered. He read it over the phone and offered to fax it but I don't have access to a fax right now. I'll pick up a copy next week) Anyhow, the descriptions of what exactly it was in each breast left more questions.
They recommended and ultrasound and if nothing could be determined by that then it's off to another, more specialized MRI.

The long and the short of it is that there is something in both my breasts that may or may no be cancer.

So we move on to my frustration with the surgeon. The oncologist handles me for chemo and radiation. But none of that happens until after the lymph nodes and any other cancer is out. My surgeon seems to be a little slow on the uptake. The only reason I know the results of the MRI are because the oncologist said to call him to find out. Otherwise I might be blissfully sadly unaware thinking that the results aren't even there yet. My surgeon does not seem to be very proactive. My thought is what the f*ck are you waiting for??  The longer we wait around sitting on our hands the more opportunity this shit has to grow and spread. Not good.

So after I got off the phone with the oncologist I called the surgeons office and made another appointment. Truly, I'm mad at myself. I had an appointment with her yesterday and she said not to bother keeping it, to wait until I heard from her office. Well, I'm not waiting anymore. She doesn't seem to realize who she has for a patient. Words used to describe me  - stubborn, control freak, impatient , so if she thinks for even the slightest minute that I'm doing this on her schedule...she's mistaken.  Sorely mistaken. I will not sit on my hands and wait.  I will do.

I'm also a little miffed that I left not one but two messages for her to call me and neither were returned. Also not acceptable. I realize she's got lots of patients and a busy schedule but she's also got my life in her hands so if she can't take 5 minutes to call me back I will be happy to ask for a new surgeon who can. Not acceptable.

So, I wait. Again. I see her next Wednesday and as with the oncologist I will go armed with a list of questions. I will also address these issues I'm having. The downside to this is that Sean will not be going with me to this appointment. It's on a scheduled work day. He's already missed so much and since I figure she's not going to tell me anything I don't already know (thanks to the oncologist) he should go to work.

I worry too about my job. Again. When we got the plan from the oncologist I emailed my union president for some advice on who to talk with from my union about this. We don't have a collective agreement yet and I worry about job protection when I have to take and extended time off. The way things are going - I may be going back in September after all, if even for a few weeks.

I don't like being in limbo. I don't like not knowing and most importantly, I don't like not having a plan. I'm a planner. It's what I do.  And yet, again, maybe I should take heart in the fact that wherever the source of this ugliness is, it's not blatantly apparent - which I would think means I caught it really really early...which would be a great thing.  I hope I'm right. I'm trying my absolute best to not take the pathology report and google. Dr. Google is bad and does nothing but scare me.

Now something a little more positive.

Yesterday we took the girls and a friend for each to Canada's Wonderland.  We haven't been there in about 5 years. The last time we went Emily was too afraid to go on most rides. We spent upwards of $200 to go and she went on about 5 rides and wanted to leave. Sean and I were unimpressed and vowed to not go back for many years.

Anyhow, now Emily is as tall as me and less fearful. Mary just made the 48" height requirement for most rides. So she was able to go on some of the big roller coasters. Mary's friend is almost Emily's height so she had no problems.

I can't remember the last time I had so much fun. Wonderland is one big line up, true, but all worth it. There were a lot of things we wouldn't go on, just because the lines were two hours long but I got to take Mary and her friend on their very first real roller coaster. I got to go on a few rides myself that I never thought I go on (one was a roller coaster in which you lay face down - yeah, it was a hell of a lot scarier than it looked when I was in line)  And of course, we did some of the good old standbys like the tea cups (only at Wonderland they are barrels)

I truly had fun yesterday and relaxed. I didn't think about this ugliness, even after I spent 20 minutes on the phone with the Dr.  I was just me. It was nice bit of denial. I'm hopeful that I'll still be able to get to the trailer in two weeks and enjoy a bit of the same.

And so, we move on. Hopefully there will be some written in stone answers soon and a clear path for treatment.  I don't like being frustrated.

2 comments:

  1. Oh Jean, that is unbelievable. I totally agree that the surgeon needs to get her act together. That is totally not acceptable. And having a vague report is beyond frustrating. I have had my share of medical oddities (my doctor refers to me as a medical mystery) like having an 11 month miscarriage, but nothing like what you are having to deal with. The fact that it is so vague probably does mean that you have caught it really early, which is exactly what you want. I am so sorry you are having these additional frustrations, on top of everything else. There are a lot of us in your court, so if you need anyone to kick some medical butts, just let us know :)

    Holly

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  2. Ugh! So sorry you are dealing with this on top of the unknown. But I also firmly believe that the reason this is so elusive is that you have caught it early and therefore can beat it quickly! Also, a quick thought, if Sean can't be with you, a friend (who is a nurse) recommended that we take a voice recorder to the appts with the surgeon, oncologist, etc for my dad's case. That way, if you don't quite remember what they said, you can always go back and listen...

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