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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Monday, June 9, 2014

Never Going Back Again

♬Been down one time, Been down two time, Never going back again 

I was planning to go down to the ER after work to get the MRI done that my oncologist told me to go to the ER to get, but I ended up having to go earlier because I was having chest pains and extremely short of breath for about an hour or two. So, I listened to everyone telling me to go and I had my mother take me to the ER - and I'm never going back, again!
When I got there,they got me back quickly, and did an EKG.  The EKG did not show anything, so they put me in a room and left us for several hours.  Eventually, a doctor came in and I explained the current issue with the chest pain and breathing difficulty (which by this time was no longer a problem because it had been several hours) and I also told him about what my oncologist had asked me to go to the ER for (the cervical spine tumor that is probably pushing on a nerve that has the potential to cause paralysis).  

He ordered a CT scan. I had a CT Scan on Thursday and I told them this, but they insisted, so I let them do it.  It took another several hours for them to come to get me for the CT, only to find I had no IV.  They decided to use my chemo port to deliver the contrast, and they spent another hour trying to figure out which kind of port I had.  I had the port installed at another location of the same hospital, yet they had no idea what it was.  I would think that my medical record would be accessible between locations, but I guess not.  I ended up having to dig out my card that they gave me when it was installed.   They were finally convinced that I had power port and that it was ok to use it for this purpose.

The nurse came in to access my port ,and it was clear that she had only done this procedure a couple of times.  She first ripped off the EKG things that were still stuck on my sunburn, which caused so much pain I almost screamed.  She did not use anything to numb the port (I've always been offered the cold spray every where else I've been) and afterwards insisted on putting the huge bandage directly on my sunburn. When I made an attempt to argue that it was never done by anyone else, ever, she insisted it was necessary to prevent infection.  I guess the chemo labs I've been in many, many times where all those people with compromised immune systems are receiving chemo through their port don't care about infection because they never use the huge torturous bandaid that comes in the port kit (YEAH RIGHT??).

After I made it through that painful ordeal, we sat for another couple of hours until they finally took me back for a CT scan.  The technician asked me if I've ever done this before and I told him I do it every three months and just had on one Thursday.  He ignored what I said, and continued to explain to me how it works and how the contrast would make me feel.  If he was going to tell me what to expect anyhow, why bother to ask me if I've had one before?  By this point I'm so frustrated and annoyed that I can barely contain myself and not lose my temper.  

Somehow I made it through the scan and they take me back to my room.  The first thing the tech tries to do is put a blood pressure cuff on the right arm.  My right arm is clearly labelled with a bright pink bracelet indicating that no needles or pressure are to be taken on that arm due to risk of lymph-edema.  He asks if there is anything we need, and I ask if I can have something to drink (they told me I couldn't until after the ct).  They told me no, that I would have to wait on the scan results.  A poster on the wall said 90 - 120 minutes for ct with contrast.  That would mean almost 8 hours without a drink while I'm sun-burnt and being told I should be sure to drink plenty of water to stay hydrated by a nurse who comes into the room to tell me no liquids or food.

The doctor eventually came in and tried to tell me that I had a lung infection.  I have no symptoms of a lung infection.  No respiratory, no fatigue, nothing.  The pain and breathlessness only lasted a couple of hours and is gone.  He said it looked like pneumonia or TB, then said something about pain pills and antibiotics (note: I tried to give my bag full of drugs to multiple people so they would know what all I am taking and no one ever took my drug history despite my attempts!). He was prescribing medicine, to a metastatic cancer patient, in active treatment,who he has no drug history on?  Brilliant.  He tried to prescribe me an antibiotic for my asymptomatic TB or Pneumonia.  I refused both and then asked about the MRI.  He refused to do the MRI, and proceeded to explain my ct results to me talking about how they saw this or that and talking about my cancer and saying they think it's in my lungs.  I think I'll pass on a local radiologist and an ER doctor's interpretation of my cancer diagnosis.  I think MD Anderson has that covered.  I grew so frustrated and just looked away.  He got rude and mouthy and left.  I was glad to see him go!

At that point I had had enough and realized nothing was being accomplished.  I was in pain from the sunburn and the bandages and frustrated and fed up.  It is extremely exhausting to have to always fight for decent healthcare.  I was done.  I started requesting to have the port catheter removed.  I spent another 2 hours asking and asking to have it removed.  Everyone said someone was coming and no one ever came.  The longer I sat the more annoyed I got.  The doctor came back to try to explain my ct results again, but he was contradicting what I've read myself on the radiology reports and trying to say I had cancer in my lungs or something or that it was TB or Pneumonia...I just shut down and stopped responding, when he left I was in tears and just ready to get out of that awful place.

We made multiple attempts over the next few hours to get them to come remove the catheter.  I finally just got dressed and said, "Let's go, we'll go over to the chemo room at my oncologist's office and see if they'll remove the catheter."
We were about to walk out the door, when one of the lady's from church stopped me and was praying with us.  The nurse came over and interrupted our prayer and asked if I just left room 12.  Now all of the sudden they wanted to remove it...  

We finally left and drove home, and to add insult to injury, the doctor up there called in a prescription even though I refused it multiple times at the ER.  He called it into a pharmacy we don't even use anymore!  The pharmacy called us saying they had to contact our insurance.  Jesse called them back and told them we didn't ask for it and didn't want it, but they filled it anyhow, and called back to say it was ready.  And even though we've met our max out of pocket for the year, they wanted us to come pay $80 for it! Pay $80 for a prescription that we didn't want, that was called into a pharmacy we don't use, against our wishes??!? Seriously?  Who does that??

After this experience, I feel my chances are better to risk it and deal at home if I have an "emergency" type situation. I won't be going back to the ER unless I'm unconscious or dragged against my will!  I have enough things to deal with already, and the last thing I need, is to fight the people who should be helping me.  I got absolutely nothing accomplished today and walked out in far more pain than I had when I walked in.  I also lost several hours at work and left them short handed.  I'll probably have to make an extra trip to Houston later this week to get the MRI done.



  1. Hugs, hugs and more hugs!!! I wish I had more profound words than "I am so sorry you had to go through this today." My thoughts and prayers are with you and your family. Dana

  2. I admire your restraint!..somebody would have had a fat lip. You can call your insurance and advise them that you REFUSED the prescription and they still filled it..they should be able to straighten it out...

  3. That's the craziest mess I've heard. Which hospital was this? NOT all ER experiences have to go the same way! And the only reason I say that is because you do want to have a local option that you like going forward.

    I've always liked the main Harris hospital in downtown Fort Worth for excellent care. I will be sad if that's where you say you went!


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