Just wanted to let everyone John and I appreciate all the prayers over the weekend. My parents were a lifesaver for us this past week and weekend as well. Thanks.
What started as a routine cleaning to the dentist about 3 weeks ago, turned into expecting some form of cancer from a biopsy performed a week ago, to surgery on Saturday. I saw my dentist for a routine cleaning and he noticed a lump on the roof of my mouth. I think I have had this a while, but I really couldn't remember if it was 6 months or 2 years that I had noticed it. It did not hurt, except when I swallowed a large amount of food or liquid or if I crunched on hard cereal or chips. The dentist suggested I see an oral surgeon. I asked him if I could wait until the end of the pregnancy and he suggested to see them right away. I also asked him if he had ever seen bumps or lumps like the one I had and he said only in pictures in books. (clue #1 that something was odd)
I went to see the oral surgeon the next week. He tried to aspirate the bump with an 18 gauge needle (a very large needle). Nothing came out which suggested the bump was solid. He did not know what it was and suggested I see an ENT. Again, he said not to wait. The needle aspiration was so painful it actually brought me to tears (quite embarrassing at my age). The oral surgeon mistook these for tears of anxiety over what the lump was and tried to reassure me he thought it was some benign "tumor" and the treatment of it would be to remove it. The tears were from extreme pain. My mouth was sore for a few hours after that, but in retrospect of what was to come, it wasn't too bad.
The following week I saw an ENT near where I live. This was last Monday after my OB appointment. I had mentioned the lump to my OB and he suggested that a biopsy or removal of the bump under local anesthesia was completely fine. I saw the ENT later that afternoon. This was not a good experience. The ENT was rude to Jack and his nurses and pretty blunt with me. He suggested the need to do a biopsy. He did not use anything to numb my mouth and proceeded to use hemostats (blunt scissors) to take a piece of the lump out of the top of my mouth. He actually had to attempt this twice as I pulled away from him during the first attempt. I cannot begin to tell you how painful this was. To top off the visit, before the biopsy, I asked him if he ever sees lumps like this and he said he does all the time. I asked him if they were benign and he said they were usually malignant, hence the need for the biopsy. OK. Now what? After the biopsy, I asked him again about seeing these and said, these are most likely malignant? He said, no, you are putting words in my mouth, I said they are USUALLY malignant. This shows you how nice this ENT was. He said call the office on Friday for the biopsy results (4 days for biopsy results?). I asked him what the treatment plan would be if this was malignant and he said we are getting way ahead of ourselves, let's wait and see the results first. I left his office a mess. My mouth hurt and I was anxious over the thought of cancer.
At home that evening the pain got worse and worse. By the time John came home, it was hurting to talk and swallow my saliva. I actually had a spit cup. John called the ENT through the answering service and the doctor wasn't the nicest to John either. He asked him why he thought he could call him at home to discuss my pain issue and the treatment I received in the office. He told John to have me call the office in the morning. I was up all night in pain and by 4am I was on the phone asking my mom to come up to stay with us. I called the OB and ENT as well and the ENT was finally nice on the phone. He didn't know what to call in for me for pain since I am pregnant and so he called in some topical lidocaine which would numb the mouth. The pain I was having was nerve pain. If anything touched that biopsy spot (tongue from talking or swallowing) I would have pain in my jaw, teeth and ears as well as that spot. My OB said I could come to the ER at Northwestern or call the OB nurses in the morning to see if I could see another ENT at Northwestern later that day. I decided to wait and call the OB nurses rather than go to the ER since I didn't know how long I would sit in the ER and it was almost 6am.
My OB nurses at Northwestern got me into to see Dr. Pelzer that morning. He was in surgery all day and made a special trip up to the clinic just to see me. And he was so nice. He looked in my mouth and said the other ENT was possibly right, lumps on the roof of the mouth are often tumors of the Minor salivary glands and are likely malignant. But he said they can be benign too and there are other diagnosis for lumps on the roof of the mouth. He told me not to loose sleep over it and wait for the biopsy results for a plan of treatment. If it did turn out to be malignant, the treatment most of the time is to remove it. This is not the type of cancer that spreads all over the body and is life threatening (why didn't the other ENT tell me this?). Pregnancy could cause you to have all sorts of growths in the mouth as well. After consulting with my OB, he gave me Tylenol with codeine and an antibiotic. He, as well as the other ENT, did not understand why it was so painful for me. Later that evening my mom came up to help out. I was still having a hard time talking, swallowing and eating.
By Thursday, the biopsy results came back. Schwannoma. This is a benign tumor of the nerve cells and can occur elsewhere in the body, most often the trigeminal nerve in the neck. The first ENT that I saw had never seen one of these before. He referred me to Dr. Pelzer (little did he know I had already seen him) who is chief of Otolaryngology of Northwestern medical school and head of the department at the hospital. Once I faxed the results to Dr. Pelzer, he called me Thursday afternoon and told me that he had never seen one of these on the roof of the mouth. He has removed them from the neck area that have grown to the size of a golf ball. He suggested to give the pain a few more days before we remove it since it would be better to have surgery after the pregnancy. I was to see him on Monday. At least the diagnosis explained the tremendous pain I was having. I was beginning to think it was psychological or I was a little wimpy.
By Friday night, the pain was so much and it was still hard to me to eat and drink. I was still spitting out my saliva. Worried for the babies and dehydration, John called Dr. Pelzer and after consulting with my OB, I was admitted Friday night for surgery on Saturday. After weighing all the options, we decided to go on with the surgery, even after it was decided I would need general anesthesia. A local block and sedation would not have worked to cut this tumor out. The risks for the babies are greater with general anesthesia, but they were monitored before the surgery and after. The other options of keeping me in the hospital on pain drugs for weeks would cause my babies to be born addicted to drugs and trying to use a nerve drug for a few days before surgery was risky since the doctor didn't think it would work and I couldn't stay on the drug long term either without knowing what it would do to the babies.
The surgery went well. This was the first time I had ever had any sort of surgery. I recovered in the hospital all afternoon and my mouth was numb. Since Dr. Pelzer had never removed this type of tumor before, he didn't know if the numbness would go away. They removed my nerve and tumor at the same time. When these occur in the neck, they are able to remove the tumor and keep the nerve since the nerve is bigger in the neck area. I was able to drink liquids that night. By bedtime, the numbing had worn off. Saturday and Sunday night I had to take some pain medicine, but my mouth was so much better. The nerve pain in my jaw and ear are gone. I just have pain on the top of my mouth and in my throat. And, I am finally able to eat soft solids! Each day it seems to be getting better and I think I should be able to eat food by this weekend. I am keeping McDonalds in business with my daily shakes! Dr. Pelzer sent off the remaining tumor for biopsy and we should know those results by the end of the week as well. Not that we are expecting anything new from this second biopsy. He also reassured me he sent the margins around the tumor to pathology and they came back normal tissue so he is confident he got all the tumor.
Well, that is the story so far. I have noticed I am feeling more tired which I don't know is from the surgery, pregnancy or both. My mom left yesterday evening and I am feeling better each day. And, since I am now just about 24 weeks, I have people coming to help out for the next few months. Thank you everyone for the prayers.
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