Tuesday, May 17, 2011

Last visit with the surgeon

So I saw the surgeon for my "de-stitching" yesterday.  I was ready to get my reports and tell him how I felt about the way I was treated and get out of there and hopefully never have to return! We got there and of course had to wait.  About 40 minutes later....he strolls in and told me to go ahead and get up on the exam table.  I asked if we could ask some questions first, since last visit we didn't get to.  He looked astounded, but said ok.  I asked him what stage I was.  He said, "Stage 1, wait,ummm..."  he takes out his cell phone and after looking at it for a minute he says," Stage 2.  You were a stage T2. "  I said , "What Clark level and Breslow level am I?"  He looked surprised and said, " Well, you were at like a 1.15mm depth, I told you this before...."  he acted arrogant, like he had somewhere to be and he just wanted me to shut up, get on the table and let him take my stitches out so he could go.  Oh, no, not that easy.  I had questions and I was tired of being dismissed with half assed answers!  I asked him if he could give me a copy of my operative and pathology reports and again he seemed surprised.  He agreed.  He then said, " Oh and your results were actually sent to New York to a dermatopathy lab. "  He had told me Thursday that they had been sent to San Francisco to a lab for a 2nd opinion of results.  So....he was just telling me BS to pacify me.  He then said, " Any more questions?"  Like this was a game to him.  I said," no I guess not!"  Jumped up on the table, not hiding my disappointment.  He again, looked surprised, and said, "Is there a problem?"  I said, " Yes, there is a BIG problem!  I am not happy with the way you are treating me."  I then calmly told him how I had to wait and wait for results, because someone had "misplaced" my slides and that delay along with them sending my results out and not understanding WHY that had to be done, I was basically laying at home thinking I was going to die, that something was seriously wrong and I did not harass them, or him for answers, and he called me back Thursday and made me feel like I was being a problem.  I went on about how I had to initiate every call.  I didn't have clear instructions on discharge and even had what seemed to be an infection and nothing was done about it.  He listened and tried to defend himself a few times.  I needed to just be heard.  I wanted him to know that a little compassion on his part and explanation of what was going on, would have saved me a lot of grief.  I told him that I felt like he was in a hurry to get us out of there and didn't answer our questions last visit.  He didn't apologize.  He simply said, " Well, I thought I called YOU on Friday."  I said, "You did!  And I appreciate not having to wait the entire weekend for results! But you also told me the day before that, that I needed to be patient and the results could not be rushed, that my treatment depended on these results.  He put his head down for a minute. I told him that made me mad and upset me tremendously since I had been dealing with a lot on my own and not calling and bugging him!  He then asked if I had any other questions and I said I had questions about my future.  What about follow up's and precautions, should I get scans.  He asked if I wanted to see the Melanoma Clinic head guy and I said sure.  He then took out my stitches and MAN did that HURT!!  I got my operative report, but the path report was not available yet, he had only gotten a verbal on that Friday.  He said I could call and his secretary would be able to forward it to me. Then he left.  I read my op report and found out that 3 Lymph nodes were actually removed.  He didn't know last week off the top of his head and even thought the report was on his desk he didn't go get it!  We met the  head guy of the melanoma clinic and he was very nice.  He answered my questions.  I don't have to follow up with my surgeon until 1 year from now.  I need to see my dermatologist every 3-6 months. I don't need any scans, they feel that I am complete in my therapy since everything came back clear. I was satisfied. I got home and called my dermatologist.  I have an appointment next Tuesday for removal of a basal cell spot on my chest and I will be asking him what my follow ups should be.  I have this horrible feeling that it is going to come back or that I already have another spot somewhere that I don't know about and I am scared to death!  I will definitely be going to University of Michigan for any further treatments, if I need them.  For now, they say I am clear.  I do not have any melanoma cells, (from this particular mole), in my lymph nodes or around the original site.  I am not quite sure what that means.  I am going to be getting the path report as soon as it is available.  It was only a verbal that he was given.  I don't know what the "T" stands for....I have heard of A or B, not T.  I never told him that I am in the medical field.  I let him talk down to me at every visit, like I didn't know med terminology.  I wanted him to tell me like I was new to this, sometimes that way you get more info. 
I went back to work today and they allowed me to do a sit down job since I am still having a lot of swelling and problems walking.  My leg is numb from my knee to my groin on the inside of my leg above my incision.  It swells behind my knee and in my upper thigh.  I can't straighten my leg out completely either.  But, I can do more every day.  I am not going to let this get me down.  Everyday I reach a new milestone.  It sometimes gets frustrating because I want to do everything NOW!  But, I am trying to remind myself, that it will happen.  I can't rush the healing process. 
I feel like I want to do something special to raise awareness and money for Melanoma research.  I know they are finding out new things everyday and I hope I will see a cure in my lifetime.  I also hope that I can make people stop tanning!  I know it's a lot to ask, but maybe my scar will be scary enough to get my point across!!


My first post op appointment was May 9th.  We got there and waited a little over a half hour for him. He was running behind due to his surgery schedule. He came in and wanted to look at the biopsy sites.  Then he looked at the large one on my thigh and said he would remove stitches.  I had to roll over on my tummy for him to reach them.  He said the area was too tight to take them all out and he was afraid it would open up.  So he only removed 8 stitches removed.   I still have 14 stitches in.  My fiance asked him some questions while he was working.  I couldn't speak because it hurts sooooo bad when he was taking them out.  He told us that the lymph node biopsy was sent out for comparison.  Whatever that means.  Kevin asked him how many lymph nodes he removed and he said he wasn't sure, 2-3 he thought.  He said he didn't have the report in front of him, it was on his desk.  Then he said that they got all of the cancer from my leg.  I wanted to say, "You should have since you took such a huge chunk." But I kept quiet.  Then he said he wanted me to come back the following Monday for the rest of the stitches to be removed and hopefully results.  He was in a hurry. I felt like I didn't get the time I needed to ask questions.  We left there feeling like we were rushed.  I was having a hard time even walking through the building.  It took a lot out of me.  I just wanted to get back home.

I have been waiting since then to hear some news.  Every time the phone rings I jump at it.  I keep it with me at all times.  Today I couldn't handle it anymore!  I let my fiance know and he called the surgeon's office and left a message.  His secretary called me and told me that she faxed a letter to my work stating that I am to be off until I see him Monday.  And she then said there are no results back yet.  I told her my frustrations about the results, not understanding what is going on and the appointment being rushed, etc.  She said she would talk to Dr. Kim and find out if he had results yet, but she didn't see them in the system.  He called me back and he was having trouble hearing me.  I listened to him quietly.  He basically said that the results were not back yet and that they were sent out because there is something they needed to verify on them.  A second opinion.  They were sent to San Francisco. (What!?) He said I needed to be patient and this couldn't be rushed, they needed to do this right.

Saturday, May 14, 2011

Friday the 13th ~5-13-11

I woke up and realized that I am still having trouble with my leg.  It is swollen even though I have ice on it constantly.  It is hard to straighten it out completely, because it is so tight like the skin is going to rip! Great! Another day of laying around, obsessing about my results.  So depressing.  I am so tired all the time, even after sleeping all night.  I hate this.  Your mind runs wild with all the possibilities.  When you are diagnosed with cancer, your life changes forever.  When you are waiting for test results, you feel completely helpless. After talking to Dr. Meanie yesterday, I felt beyond helpless.  I felt like my life was completely on hold.  I couldn't do anything.  I was not being paid to be home either.  My work could care less about what I am going through.  Only a few of the girls have been in contact with me.  My manager didn't send me flowers, even though they send them to everyone for everything.  She did send a message though.  "We don't care about you."  She did call me.  To let me know that I needed another excuse to be sent to remain off work.  She didn't ask how I was, she wanted to know when I would be back.  I don't know what I did to her, but I have a feeling that it is a combination of other people in the office, who I know like to spread crap around and want to be the favorites in the office, and her just being a very non compassionate person in general. I am not a butt kisser.  I come to work, on time, and I WORK!  I don't gossip with people, slack off, etc.  I WORK!!  I have a very hard, frustrating job, and I have had little guidance since day 1.  My year was right around my surgery time.  I wonder if I will be getting a bonus like we are supposed to.  Somehow, I doubt it.  Plus I am shy and I usually like to figure things out for myself.  But, I am a very nice person and have made some friends there.  I like almost everyone.  There are certain people that I don't care for, but I don't cause problems.  Anyway, work is a whole different story for another time.
I decided I would spend my day researching melanoma again, spreading the word, or "spreading the lotion" as I like to call it.  I was checking out the University of Michigan in Ann Arbor and was finding out that it was the best place to go in Michigan.  I was deep into my researching when my cell phone rang.  Probably my fiance.  He is so great calling me and checking on me all the time.  I hated that he had to go back to work while I was falling apart and so stressed.  I was sure I was going to get horrible news and I didn't want to be alone when it happened.  It was Dr. Meanie's office.  Probably to remind me about my appointment on Monday, I thought.  "Hello?"  " Melissa? This is Dr.Meanie"  ( that's not his real name, it is what I have decided to call him :) "Yes?"  " Your path results are in. There is no cells found in the lymph nodes."  "Ok. Thank you."  Click.  I hung up.  What?!!  I called my fiance at work.  I told him and when I said it out loud it hit me.  I don't have melanoma!!  I don't have to have another surgery!  I was so happy!  We both cried together.  We decided we would be celebrating this victory with a BBQ dinner.  Kevin was even going to come home early!  Yay!!  When I hung up the phone I was so overwhelmed with joy that I cried happy tears.  I broke down.  It felt so good!  Praise God!!!  My prayers have been answered!  I was going to be ok!!  I had so many people to tell!  I tried calling my Mom and she didn't answer the phone, I left a message for her to call me.  Maybe she was in the bathroom or something.  I texted my sister and waited.  I wanted to tell my family first before posting it on Facebook and here on my blog.  No response.  WHERE WAS EVERYONE AT??  I have GOOD news!!!!!  So, I called my sister's house.  She answered!  I asked what she was doing and she said my Mom and stepdad where there.  I thought my dad was on the road?!  He was home again??  I was happy they were all together, so I said put me on speaker phone, I have some news.  She did and I told them, "I got a call from the surgeon's office today about my results.  They found NO CANCER in my lymph nodes!"  Everyone was VERY happy of course.  My Mom kept saying "Are they sure?"  One of the happiest days of my life.  I will not stop spreading the word about melanoma and the dangers of tanning.  I will keep careful watch of myself and my loved ones.  It is a blessing that I am clear, but I have an increased risk of it coming back.  I will continue my fight and stay a survivor.  "Spread the lotion" with me.  Indoor tanning increases your risk dramatically!  75%!!  That's too much.  Melanoma can spread to other organs, it is fast moving.  I am lucky and blessed to have found mine early.  There are too many young ladies dying and it just breaks my heart.  Take care of your skin, it is the only one you get!!!!


.  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!!

Monday, May 9, 2011


Sorry I haven't been feeling much like writing or even hearing about melanoma the last few days.  I think I was on the verge of becoming severely depressed.  I didn't want to move, I didn't want to talk to anyone and blew off many friends and family.  I didn't really get out of bed, but I couldn't sleep either.  I stopped posting melanoma videos, and facts to my Facebook and I didn't want to write here.  It was a very scary, dark, sad and lonely time.  It started I think from a combination of feeling like people didn't care about the word I was trying to spread and just feeling sorry for myself.  Also I felt like life was going on around me and I was pretty much useless because I couldn't do anything I normally did!  It was and is extremely frustrating.  I thought I would be better by now.  Why was I having such a hard time!!  It wasn't fair!  No one understands what I am going through!  No one cares....  

Then my family rallied around me, boosting me up.  My fiance listened to me talk about my frustrations and he told me that it is going to take time to heal.  I was being too hard on myself.  I felt so bad how much extra he had to take on because of me.  He assured me that he was fine with it all.  It pushed me to try to get better and stop feeling sorry for myself.   I spoke to a friend that made me laugh, something I hadn't done in awhile. Slowly I started to pull myself together.  I got good news on Friday from my surgeon.  They got all the cancer from my biopsy, but the lymph node biopsy was not going to be back in time for my post op appt on Monday.  That was disappointing, but I was grateful to get some good news!!  That means I don't have to have more of my leg taken!! 

I have learned how to be humble.  How to accept help.  How much I am loved.  I am so appreciative of all the messages, texts, phone calls, sharing my posts on Facebook.  I am grateful for my kids for helping out around the house, for the love they have showed me during this time.  I am grateful for my family for helping me "spread the lotion"  and supporting me and taking care of their skin by getting skin checks and using sunscreen.  I am grateful for the new friends I have made, that I can share my experiences with and hear their stories and spread the word with.  I am grateful mostly for my fiance, who everyday he did his job and mine too.  He took care of the kids, the house, everything he could do for me he did.  Not once did he complain.  Not once did he show how scared HE was.  He was and is my support.  My hero.  I love you Kevin.  Forever!  I love all of you!!

So today is my post op appointment and I am anxious to speak with the surgeon about my surgery.  I have many questions.  I also am looking forward to getting my stitches out.  I think I will be able to move my leg better once they are gone.  I am getting better everyday.  I feel stronger everyday.  I have learned that life is precious and I have a lot to do still!  I also learned that I am a fighter and when I am too weak to fight I have my family and friends to fight for me!!  Thank you.