Saturday, May 14, 2011

Frustrated

.  I  had my surgery (wide excision biopsy of my right leg and sentinel lymph node biopsy) on 4-27-11 at Karmanos/Harper Hospital in Detroit. I was told when I scheduled my post op appointment the next day that the surgeon would call me with results when he received them.  I wouldn't have to wait until my post op appointment on 5-9-11.  So I waited and waited.  Finally I called and left a message for his secretary on her voicemail on 5-5-11.  She called me back the next day, which was a Friday.  That's when she told me the pathology lab needed my original biopsy slides.  She wanted me to call my dermatologist's office and find out if they had them or if they were somewhere else I would have to pick them up and bring them in on Monday to my appointment.  So I called and left a message with my dermatologist's office staff.  They called me back a half hour later and said that the slides were sent back on 4-8-11 were sent and they just talked to someone at my surgeon's office about them.  I called my surgeon's office back and told the secretary what the dermatologist's staff had said and she asked for their number because they did NOT have them.  Total frustration!!!!  She called me back and informed me that the lab DID have them.  I wanted to scream at her but I didn't.  It wasn't her fault.  Then I asked when I would get results and she said not until my post op appointment on 5-9-11 hopefully.  (What?!!)  I was tired of waiting.  I needed those results to tell if they (1) got all the cancer on my leg at the original site and (2) if the lymph node(s) are clear of cancer.  The results were going to tell my fate.  They would dictate my treatment.  I wanted to know who screwed up and I wanted to wring their neck!!!  But I was calm and said ok.  What else was I going to do??  I got a call a few hours later from my surgeon and he coldly told me that they got all the cancer from the excision biopsy on my leg.  WHAT A RELIEF!!  I thanked him and was very happy about that victory.  Now if only I could have the other results.  I went to my post op appointment on 5-9-11 and was very frustrated with the whole thing.  The surgeon was running behind, we knew he would be, but he rushed through the appointment and didn't answer our questions at all.  Kevin asked him how many lymph nodes he took and his response was, " I am not sure, 2 or 3.  The report is on my desk."  Ok, so go get it!!  Then he took only 8 of the 22 stitches out because it wasn't healing and it was too tight.  Kevin asked him if he did the "flap" procedure he was talking about at the initial consultation.  He said no, that he was able to use my skin because it was loose enough.  I was glad he didn't have to do a skin graft, but I think he should have done the "flap" because to this day my leg is so tight I can't straighten it all the way out.  He sent us on our way without answering our questions.  His explanation of why the results were taking so long was that they sent them out for a 2nd opinion.  Then he said the chances of there being any cells in the lymph node(s) were 10% and that those were odds you would take if you were in Vegas.  (??)  Well, I am not in Vegas.  This is MY LIFE!!! Needless to say, I was very disappointed and left feeling very defeated.   So we waited and waited and WAITED some more.  I finally couldn't take it anymore and 3 days later, on 5-12-11, I told my fiance how frustrated I was.  I had talked to other people who said they got their results back within DAYS.  I didn't understand why they had to send them out unless there was something bad there.  Why didn't he just tell me?  My fiance was great.  He called the secretary at the surgeon's office and left a message for her.  I got a call within the hour.  She told me that she had faxed my letter to work that I had asked for the previous day. And then she said the results were not back yet.  I was so disappointed and frustrated beyond belief.  I told her that.  It was not ok. I was severely depressed.  I wasn't healing as fast as he had told me (5-7 days he said I could return to work, yeah right!  I could barely walk!)  I wanted, no I NEEDED to know something!   I told her that all I knew was that the surgeon said that they sent them out to another lab for a 2nd opinion.  She said they usually only do that when there is a question about something that is on it.  (DUH!!)  I don't know how I remained calm, but I did.  She said she would call the surgeon and find out if he had results, but that she didn't see them in the system.  I thanked her and waited some more.  The surgeon called me a short time later and was very cold. He was having trouble hearing me.  He said HE wanted to call me to let me know what was going on.  (REALLY?!!  YOU wanted to call ME?? I'm sorry, I thought WE called YOU!  Just like always!!)  I listened to him and didn't say a word.  He was having trouble hearing me anyway.  (stupid cell phone!) Then he said they sent my slides to SAN FRANCISCO for further examination to get a 2nd opinion on the results.  (SAN FRANCISCO!!!  this was not good).  Then he said that I needed to be PATIENT and this could not be rushed, that my treatment depended on these results.  ( REALLY??  NO SHIT SHERLOCK!!)  I was so furious for him talking to me like that!  I had been nothing but patient!  I called TWICE in 2 1/2 weeks for results!!  I was not calling daily, I was not causing problems.  I was not harassing them, demanding answers on why my original slides were "misplaced" for 1 1/2 weeks AFTER my surgery!  I was being a good patient.  But now I was mad.  I calmly told  him that my lymph node biopsy site looked infected. He started saying, "Hello, hello".  Great!  He couldn't even hear me!!!  I hung up and he called back.  I let it go to voice mail.  All I wanted were my results!  His message was simply to call him back if I had any questions.  Yeah I have questions!!  I was beyond pissed now.  I was furious!!!!  How dare he talk to me like that!!  I decided that I was going to take control of my treatment.  It was after all, MY LIFE, not his.  I wasn't going to let him talk to me that way, or treat me like another surgical case.  He was going to hear me out and whatever the results, I was going to finish my treatment at U of M, where I should have gone in the first place.  I was going to tell my dermatologist about my experience and I was going to research U of M.  I was going to have a list of questions for my appointment with Dr. Meanie on Monday and he was going to answer ALL of them to my satisfaction before he walked out of that room on me. He was most importantly going to give me my results.  I was not going to leave without them!  And finally, I was going to get copies of my operative and pathology reports and I was going to tell him exactly what I thought of his bedside manner, but in a nice way.  I didn't need to scream, yell and swear at him.  I just wanted him to know that the way I was treated was UNACCEPTABLE.  They should definitely teach doctors, especially surgeon's, to have compassion.  I think too many people choose careers for the money.  Not for the right reasons.  When it comes to an surgical oncologist, they need compassion.  I hope U of M proves to be the right place. We will find out soon enough!!

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