Recovery

December 13th My surgeon called and said that the tissue removed from the second surgery was clear, so I don’t need another surgery.

December 14th I had my follow up appointment with my surgeon from my second surgery. He said that I was looking good and healing well. He said that one of the reasons that my case is so hard to pinpoint is that when they looked at the tumor that was removed from the first surgery, they found not only Melanoma but Spitz Nevus and scar tissue. This makes staging my case difficult because one of the factors used in staging is the size and depth of the tumor. We asked him to refer me to another Oncologist, he gave us a few names, we decided to go with Dr. N who is at IU as well.

December 23rd I meet with a new Oncologist.

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Second Surgery

December 1st was the day of the second surgery. I went in with great apprehension due to how sick I was from the first surgery. I spoke with the anesthesiologists about the last surgery and asked them to not use the same medications.

They did everything different; this time using IV anesthesia instead of gas, a nausea patch behind my ear, and a different pain medication. It worked, to my surprise I woke up with no nausea! I even felt good enough to go home that day.

My surgeon had said that he may have to do a skin graph with this surgery, but turns out he didn’t. Once the strips on the site came off after surgery I was surprised how good it looked. He basically just extended the old scar back so I don’t look as much of a patchwork as I thought I would.

Before surgery my surgeon took time to talk with us about my case and about our appointment with the Oncologist. He said that he is very aggressive in his treatments and agreed with us that he does not have the best bed side manner.

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Healing

I am feeling better. The swelling is starting to go down and the skin graft is getting more natural coloring. The bruising on my stomach is starting to heal. I am still unable to lift anything or drive. My neck has very limited movement. I can use my right arm, but still have limited movement with my left.




These were taken Nov 19th 23 days post surgery.

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More Surgery

November 11th We got a call with the good news that the lymph nodes that were removed during surgery was not cancerous!! That was a big relief! The nurse told me that there was a chance I may have to go in and have another surgery to remove more from my neck. She said they were still waiting on the pathology report.

November 16th I went back to the surgeon for a follow up. He told us again about the lymph nodes being cancer free. He told us that it was especially good because of where they were. He would not have been able to go back in to remove anymore, which would have meant needing other treatments, so that was very good.

He then said, now we have something else to discuss. I knew then that I was having surgery. He explained to us that the margins they cleared were from the tumor on my neck, however what the pathologist found when he dissected and tested the area he removed was that the tumor was growing under the skin along the old scar from where they had removed the area in 2005 and 2006. This meant that he needed to go back and clear the margins from that part of the tumor.

He also mentioned that sometimes a tumor will skip over an area of skin and grow; so if the area he removes this second time is clear then I am done, however, if there is any of the tumor there he would have to do yet a third surgery to clear the margins again. He didn’t sound like that was likely, but nothing about this has been “normal”, so it is hard to say.

He mentioned that the pathologist was scared of me because of how gray my case is, it has been very hard for all the pathologists and Doctors to deal with. He went and looked at my slides himself and between him and the pathologist they decided with the history of my case it is best to go back and make sure the margins are cleared.

November 30th we will meet with the oncologist at the University Cancer Center.

December 1st scheduled for surgery at the University Hospital.

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In The Beginning

I was born with a mole on the Left side of my neck. Throughout my life it remained small, about the size of a pencil eraser. I wasn't interested in having it removed until it started to change.

In 1999 we took a Caribbean Cruise for our honeymoon. I noticed the mole was beginning to change on the cruise. It got larger and turned darker. Maybe it was affected by the intense sun exposure. I decided to have it removed by my family physician and they said the pathology came back fine.

Six years later the mole grew back, it was removed by a surgeon in a local Hospital. Margins were said to be cleared. It took a long time to get the test results. It went from the local pathologist to Chicago and then to Mayo Clinic. They determined that it was Spitz Nevus and not Melanoma.

A year later the mole grew back again. It looked the same as in 2005. I had it removed by the same surgeon in the local Hospital. Margins were said to be cleared. Tests done on it said that it was Spitz Nevus again.

October 2009 the mole comes back again. This time it looks different and grows much faster and larger than before. I went to the same surgeon from before November 2009, he said it was a Keloid scar and injects the area several times with steroids. He said it would cause it to shrink and eventually go away. The area continued to grow larger over the next several months. I was concerned some, but mostly annoyed.

The same surgeon put ear tubes in Coreyn the spring of 2010. When we went in for her check-up I asked him about the spot on my neck. It was getting a ring of red around the growing tumor. He looked at it and said I should see a dermatologist.

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The Dermatologist

I was not able to get into the dermatologist until the end of July 2010. She thought it may either be the Spitz Nevus coming back or just a Keloid scar. If it was the Spitz Nevus I would have to have it removed again because of how close it is to Melanoma, but if it was just a scar I would not. She did not think it was Melanoma; she even made the statement “It is not Melanoma, because you would be dead by now”. She said she wanted to do a biopsy to confirm what it was.

August 2, 2010, two punch biopsies were done. They said that because of my history of having Spitz nevus in the past it may take a few weeks to get the test results back. I did not give it too much thought. I was still just annoyed that I may have to get it off yet again. It didn’t dawn on me until the beginning of September that I had not heard from them yet. I called the office and inquired about my results. I was told that they were still doing some tests and that they had to send it to the State University Hospital for another opinion.

This was about the time when I started to worry. The next call was about a week later when she said that they would have to send it to California because it was still inconclusive. She told me at this point they had ruled out a scar, and that I would definitely be having it removed. She told me to think about when I would like to have the surgery. This is when I really started worrying. She didn’t go into detail, but I knew. If they had ruled out a scar that meant they were inconclusive about whether it was Spitz Nevus or Melanoma.

More time went by then I got a phone call on September 29th from the Dr’s receptionist. She is usually very bubbly, but this time she was very monotone. She said that Dr. O was in seeing patients, so she would like me to come in tomorrow and see her. I knew that it was bad news, had it been good news she would have called me back when she was not busy.

September 30th, Dr. O called Corey to make sure that he was coming with me to the appointment, she told him that it was not good news and that it was Melanoma. When we went to the appointment she explained what the different pathologists had found. She did tell us that the pathologist thought I may have been misdiagnosed in 2005 and that it was Melanoma then. She informed us then about the size of area that they would have to remove and that I would have a skin graph done. She still did not feel confident in the diagnosis and did not want to label it as Melanoma quite yet. She wanted it sent to a Spitz Nevus specialist in Ohio and then go from there.

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Surgery 10-27-10

October 27th Surgery day at the University Hospital. I was nervous, but glad to be on the way of dealing with this so I can get on with my life. They got me checked in and the nurses and Anesthesiologists came and introduced themselves to us. I told the Anesthesiologists that I wanted them to put nausea medicine in my IV before they woke me up because of my history of having nausea with anesthetic; they assured me that they would.

The first thing I did was the lymphogram. This consisted of them injecting the tumor two times with radioactive dye so that they could map what lymph nodes it drained to (The X-ray technician said it that it feels like a bee sting. I have a high pain tolerance, and it was much more than a bee sting!). After the injections I had to wait about 15 minutes to give the dye time to drain. He then took X-rays, they didn’t show any drainage, so I had to wait again. We did this about three times, then the surgeon came to find me because it was taking so long.

We walked back to where Corey and my Mom were and he told us about the test. (At our appointment on the 18th, Corey had asked what happens if it doesn’t show that it drains anywhere and the surgeon said that he had only had that happen one time in his career) He started by saying, well now I’ve had it happen twice. He said that it was good and bad. Good because of course we don’t want it to be in the Lymph nodes, but bad because it could be strait back where the test can’t see. He said he would have to use an instrument during surgery that picks up the dye to see if it drains anywhere else.

During my surgery he did in fact find two lymph nodes that it drained to, one on top of a lung and the other strait back behind the tumor. The surgery was only supposed to take 2-3 hours, but ended up taking about 5. He had to take off more than he thought. I had a large pad stapled over the skin graph, so we could not see that area, but we were pretty surprised at the size of the scar on my neck and the donor site; I have about a 12 inch incision on my stomach. I also had a drain tube sticking out of the right side of my chest that had to stay in until it quit draining a lot.



I was pretty out of it, but I remember my mom questioning the Doctor because of how my neck looked. The Dr. told us about the lymph nodes he found and that they were sent to pathology to see if they were cancerous. He said it would take about 2 weeks to get the results. I was very nauseous when I came to. I don’t remember too much about the days after surgery.

I remember asking the nurse why the anesthesiologists did not give me nausea medicine. She said he did, it just was not working. I ended up taking two different nausea medications and was still getting sick. They ended up changing my pain medication and that helped. By the afternoon of the next day I was feeling better and they gave me the option of staying another night and I said no, I wanted to go home. That ended up being a bad choice. They had sent me home with a pain medication script, but no nausea medicine. I started getting nauseous that night and Corey went and got over the counter medicine that did not work; Corey had to call the Dr. the next morning and get a script for nausea medicine.

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Recovery

The next week was really painful and uncomfortable. The pad they had stapled over my skin graph was pulling up on my skin. It looked like meat hanging from a hook, it was that tight. Any movement of that area was painful. I had to wear clothes that buttoned up because I could not move my arm to put on a shirt. The pain pills made me have an upset stomach and constipation. So it was a tossup at times which symptom was worse.

I had to wash up at the sink because I could not get my wounds wet, especially the skin graph area. Before I went to get my staples out my mom and aunt bought a hair dressers cape and a funnel cap that fit around my head to wash my hair with. It was actually quite comical. Corey got our camping cooler and put it in the shower with a towel on it for me to sit on while he and my mom figured out how the funnel cap worked to wash my hair.

November 2nd I went back to the dr to get my staples out. It was really painful, so I mostly had my eyes shut, but I remember the look on corey's face when he first saw the skin graph. He looked really worried. It was purple, so Corey thought it didn’t take. The surgeon said it looked good though and was reassuring that as it heals it will shrink in size and fill in more.

It looked really sunken in because of how swollen the skin flap area next to it was. My drain had to stay in because of how much was still draining. He said that when it got down to 15 cc I could get it out. He gave me the option of having Corey take it out, I said that would be fine with me (a bit reluctantly, he was too happy to do it!!). They sent us home with a kit for Corey to take it out.

November 5th I was able to take the drain tube out. Other than one of the sutures growing into the skin and Corey initially forgetting to open the bulb to relieve the pressure it was not too bad.


This was taken Nov 2nd 6 days post surgery.

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