Saturday, July 19, 2008

So this is all new to me, and it seems to be the thing to do. I have so many people wanted to keep updated on me, so I thought this would be a good way. Where to start. Not sure, I guess I'll talk a little about what I have gone through and am currently going through. Most people know I was diagnosed with cancer early in 2007. I have desmoplastic melanoma. Big words I know. I have been misdiagnosed since 2005. Actually since 2000. It all started with a mole under my jaw on my left side. It was diagnosed as a pseudomelanoma. Basically something that mimicks melanoma. Then nothing happened until 2005. I noticed a lump in my salivary gland under my ear. Of course I thought it was just a swollen gland and watched it for a couple months. After it wasn't going away I started to get worried when it started to get bigger and smaller, noticeably, every day. I went to the first ENT, ear, nose, and throat doctor, also called an otolaryngologist. You can see why they go by ENT, right? I wouldn't want to say that either. He wanted to put me on an antibiotic for a couple weeks and watch it. He knowing how rare it is to get a tumor or cancer in your salivary gland, expected it to be an infection. Me, not having a good feeling about it already told him no. I told him I wanted to do an ultrasound or something that would tell us what it is. So, we did the ultrasound and my suspicions were confirmed. It showed a mass that definately wasn't an infection or a cyst (his other guess). He told me he was available for surgery in two days. He told me that he got all of the tumor, but nicked my facial nerves in the process. The left side of my face drooped for about 6 months. The weird part about it was every time I ate or thought about eating, I would salivate as normal, but I would salivate and it would come out of the surgery site. Gross, right? It did this for a couple months. I remember getting very impatient with it. Every time I ate I was reaching for a tissue for my neck. Justin laughed of course and made me laugh about it too. He's such a tease. About nine or ten months later, I went back to this doctor, Dr. Rowley in Utah county, wouldn't reccomend him after this. My incision was getting really bumpy. He told me it was just scar tissue and not to worry about it. Me being the vain person I was, worried about it. I went to a plastic surgeon to get a second opinion about the scar. I wanted to know if he could do anything to smoothe it out. He told me he thought it was recurrent tumor. I had a feeling in my gut it was that too. He then referred me to Dr. Rober Hunter, an ENT oncologist (cancer doc). Immediately I loved Dr. Hunter. He was so personable and really took his time with me. He took however long it took to answer every one of my questions. He even stayed an hour or two after everyone elso had gone just answering all of our questions and made sure I was making the right decisions. He even invited Justin to go backpacking with him in the Grand Canyon. We clicked at once. His boy even plays football at Alta High School, where I went to school. So, anyway, we did an MRI and it showed recurrent tumor, as I had suspected. Of course it scared me to death. He told me the tumor went through my facial nerves and that he would do surgery to get most of the tumor and we would do radiation on the rest of the tumor and get rid of it that way. We did surgery and everything went according to plan, until we got the pathology report. That was the first time I heard the "C" word. I was so shocked. He had warned me that if it came back as cancer, we would have to get the rest of it, including my facial nerves. So, we planned yet another surgery. This one bigger than the last. At this time, unbeknownst to me, I was pregnant with Colton even during the first surgery with Dr. Hunter. I found out I was pregnant about a week before this next surgery. This was March of 2007 for the 2nd surgery with Dr. Hunter. So, needless to say, that changed things a little bit. Of course my health was more important than the baby's. We decided to go ahead with the surgery. So, in this surgery, Dr. Hunter took out the rest of the tumor/cancer and my facial nerves. He then had Dr. Jed Bindrup, a plastic surgeon he works closely with, harvest the sural nerve out of my calf. The incision goes up most of the back of my calf in an S shape. Dr. Hunter then put the nerve into my face to regenerate some nerve activity. It worked too. The part I wasn't expecting was how big the incision on my calf was going to be. I was mad about that for a long time. I couldn't walk for 6 weeks without crutches. That was really hard because Wyatt was only 2 and was running all over the place. I needed lots of help after this surgery. I remember I got a handicap parking placard because it took so long to heal from this one. When I was 6-7 months pregnant with Colton, I had another recurrent tumor on my incision line. It was very superficial, thank heavens, meaning it was only on the surface. This was July 2007. We did another quick surgery to remove this. Once again I was told that they got all the cancer out, or in other words, clear margins. I was good until I had Colton. Everything went perfectly with his delivery and everything. Sometime in November, Dr. Hunter had me go and get an MRI to make sure things looked good. We hadn't gotten a good MRI because I was pregnant and they couldn't give me the MRI contrast which highlights the areas the MRI looks at. So, once again the MRI showed enhancement on my incision line. Cancer again!!!! I couldn't believe it, when was this going to stop??? I remember the phone call when Dr. Hunter called me. He told me he wanted me to get a second opinion up at the Huntsman Cancer Institute. He also said IF I am still comfortable with him He would still be my doctor. In my head I was thinking that this cancer was frustrating him and that it was beyond him to deal with me. I thought that was really big of him to send me up there. He sent me to see Dr. Brandon Bentz.

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