This morning at work I kept checking my phone to make sure I didn't miss a call from the oncologist's office with the date and time of my first chemo appointment. By 10:00 I was getting irritated so I decided to be the squeaky wheel and call them. I've already plugged some names and numbers into my phone so I called the scheduler but didn't get an answer so I left a message. By 1:00 I hadn't heard back so I tried again and got her voicemail. I then called the the radiation oncologist's office. I asked for the person who called after my diagnosis to tell me I was going to have a PET scan. I told her the medical oncologist said I was going to start chemo this week and it's Wednesday at 1:00 and I'm getting a little concerned this may not happen and asked if she could help me. I then apologized if I seemed pushy and she told me I have to be my own advocate and she would do the same thing if it were her. She said she'd try to find out what is going on and call me back by the end of the day. Fifteen minutes later I received a call from the scheduler at the medical oncologist's and I am to start chemo Monday, August 4 at 8:30. I wonder if I would have received a call if I hadn't asked the radiation oncologist's person for help. Very irritating. My chemo will last 3.5 hours and then I am to go get molded for my radiation mask because I will start daily radiation therapy on August 11 after my weekly chemo appointment. I was told to get something for anxiety from my family doctor if I get claustrophobic at all and take it twenty minutes before the molding. I've looked at pictures of the masks and I don't easily feel claustrophobic but I think having my face covered with one of those could change that! Bad thing is I'll have to have a ride home if I take a med for anxiety. I'll have to think about it for a day or two.
Wednesday, July 30, 2014
Tuesday, July 29, 2014
The diagnosis
WARNING! I'm sure this will be the longest post I'll ever write but I wanted to include all the details.
I started having discomfort in my left ear/jaw area in January and at my regular six-month dental cleaning I told my dentist I thought maybe I had an abscessed tooth. She took an x-ray and everything looked normal. I saw my family doctor on January 7 and she said I had fluid in both my ears but my left ear definitely had more than the right and my sinuses were congested, but no infection going on. She prescribed Flonase nasal spray and instructed me to give it a try and to stop using it if things cleared up. On February 26 I returned because I wasn't better and I was going to fly to Hawaii for work on February 28 and I was apprehensive about flying with my ear feeling so congested. She told me I'd fought it long enough and put me on Amoxicillin. I finished the prescription in Hawaii and felt pretty good. I'm not sure if I really improved but it's hard to be miserable when you're in paradise!
After being back home for a week I thought I had a UTI and went to Immediate Care and sure enough I was right. While there I asked the nurse practitioner to look in my left ear and at my throat. My throat had started feeling a little sore on the left side and she offered to do a strep test but I declined. I've had strep throat and knew that wasn't the problem. She put me on an antibiotic for the UTI.
My symptoms kept getting worse...increasing pain in my left ear and jaw, intermittent numbness and tingling on the left side of my tongue, sore throat on the left side only, lots of sinus drainage, a really bad taste in my mouth and visible swelling on the left behind my back molars. I even put my fingers in my mouth and the left side was hard to the touch. I had also started having trouble opening my jaw and it was very painful when I forced it open all the way. I returned to my family doctor on April 24 and told her my symptoms and said, "I think I have cancer. My symptoms fit the bill for tonsil or jaw cancer." She said, "Oh you don't have cancer and I don't want to send you to an ENT at this point. They would think I'm crazy. I want you to do a saline nasal rinse every morning, follow it with Flonase and take an over-the-counter allergy medication. Do this every day and if you aren't better in a week or two I'll send you on." I followed her instructions and didn't improve so called and requested to be sent to an ENT.
I saw the ENT on May 6 and he basically blew me off. I gave him the run down of my symptoms and even showed him on his wall diagram where the visible swelling and hardness was located on the left side of my throat. I told him I thought I had cancer. He said, "You don't have anything bad. You probably just have some inflammation left over from the virus you said you had. As fast as this showed up it will go away. You will wake up one day and it will just be gone. Why do you want to have something wrong? You need to stay off the internet. And quit taking the Flonase and OTC allergy medication. You don't have allergies and you're just throwing your money away."
Well, it didn't go away but I kept hoping it would. The ENT said it would and he's the expert, or should be anyway. On July 9 I went to the dentist for my regular six-month checkup and cleaning. My hygienist asked how I was doing and I told her about my ear/jaw/throat problem and reminded her about me thinking I might have an abscessed tooth in January. She took one look in my throat and about fell off her stool. After making many calls the only ENT they could get me into quickly was...you guessed it, the same one I saw in May. Yippee!! I went to see him on July 11. I told his medical assistant how he blew me off in May and now my symptoms were 100 times worse. He came in and apologized for "blowing me off" (yes, that's what he said), looked in my throat and, I kid you not, said, "Oh my God, I made a mistake." He did a biopsy, it came back as cancerous but he didn't get enough tissue for them to make a definitive diagnosis so I had another biopsy four days later and it came back as squamous cell carcinoma.
On July 24 I had a PET scan which showed the cancer in a very pretty bright yellow. Funny how it just lights up after they give you the IV radiotracer. I've seen a Radiation Oncologist and a Medical Oncologist and they are supposed to be coordinating my care. The plan at this point is to start chemo, Erbitux, this week and continue the chemo once a week for four to six weeks. Next week I'm supposed to start radiation which I will have every day for 30 days. If today is any indication of how this is going to be coordinated I'm not so sure about the situation. Last week the Cancer Center told me they had to get approval from my insurance before they could start the Erbitux. Since today was Tuesday and I hadn't heard anything I called my insurance company to inquire about the status of the approval and was informed that approval is not necessary and the chemo could be started at any time. So, I went to the Cancer Center to drop off my FMLA paperwork and to find out when they could schedule me to start. They couldn't tell me so hopefully I will find out tomorrow.
I started having discomfort in my left ear/jaw area in January and at my regular six-month dental cleaning I told my dentist I thought maybe I had an abscessed tooth. She took an x-ray and everything looked normal. I saw my family doctor on January 7 and she said I had fluid in both my ears but my left ear definitely had more than the right and my sinuses were congested, but no infection going on. She prescribed Flonase nasal spray and instructed me to give it a try and to stop using it if things cleared up. On February 26 I returned because I wasn't better and I was going to fly to Hawaii for work on February 28 and I was apprehensive about flying with my ear feeling so congested. She told me I'd fought it long enough and put me on Amoxicillin. I finished the prescription in Hawaii and felt pretty good. I'm not sure if I really improved but it's hard to be miserable when you're in paradise!
After being back home for a week I thought I had a UTI and went to Immediate Care and sure enough I was right. While there I asked the nurse practitioner to look in my left ear and at my throat. My throat had started feeling a little sore on the left side and she offered to do a strep test but I declined. I've had strep throat and knew that wasn't the problem. She put me on an antibiotic for the UTI.
My symptoms kept getting worse...increasing pain in my left ear and jaw, intermittent numbness and tingling on the left side of my tongue, sore throat on the left side only, lots of sinus drainage, a really bad taste in my mouth and visible swelling on the left behind my back molars. I even put my fingers in my mouth and the left side was hard to the touch. I had also started having trouble opening my jaw and it was very painful when I forced it open all the way. I returned to my family doctor on April 24 and told her my symptoms and said, "I think I have cancer. My symptoms fit the bill for tonsil or jaw cancer." She said, "Oh you don't have cancer and I don't want to send you to an ENT at this point. They would think I'm crazy. I want you to do a saline nasal rinse every morning, follow it with Flonase and take an over-the-counter allergy medication. Do this every day and if you aren't better in a week or two I'll send you on." I followed her instructions and didn't improve so called and requested to be sent to an ENT.
I saw the ENT on May 6 and he basically blew me off. I gave him the run down of my symptoms and even showed him on his wall diagram where the visible swelling and hardness was located on the left side of my throat. I told him I thought I had cancer. He said, "You don't have anything bad. You probably just have some inflammation left over from the virus you said you had. As fast as this showed up it will go away. You will wake up one day and it will just be gone. Why do you want to have something wrong? You need to stay off the internet. And quit taking the Flonase and OTC allergy medication. You don't have allergies and you're just throwing your money away."
Well, it didn't go away but I kept hoping it would. The ENT said it would and he's the expert, or should be anyway. On July 9 I went to the dentist for my regular six-month checkup and cleaning. My hygienist asked how I was doing and I told her about my ear/jaw/throat problem and reminded her about me thinking I might have an abscessed tooth in January. She took one look in my throat and about fell off her stool. After making many calls the only ENT they could get me into quickly was...you guessed it, the same one I saw in May. Yippee!! I went to see him on July 11. I told his medical assistant how he blew me off in May and now my symptoms were 100 times worse. He came in and apologized for "blowing me off" (yes, that's what he said), looked in my throat and, I kid you not, said, "Oh my God, I made a mistake." He did a biopsy, it came back as cancerous but he didn't get enough tissue for them to make a definitive diagnosis so I had another biopsy four days later and it came back as squamous cell carcinoma.
On July 24 I had a PET scan which showed the cancer in a very pretty bright yellow. Funny how it just lights up after they give you the IV radiotracer. I've seen a Radiation Oncologist and a Medical Oncologist and they are supposed to be coordinating my care. The plan at this point is to start chemo, Erbitux, this week and continue the chemo once a week for four to six weeks. Next week I'm supposed to start radiation which I will have every day for 30 days. If today is any indication of how this is going to be coordinated I'm not so sure about the situation. Last week the Cancer Center told me they had to get approval from my insurance before they could start the Erbitux. Since today was Tuesday and I hadn't heard anything I called my insurance company to inquire about the status of the approval and was informed that approval is not necessary and the chemo could be started at any time. So, I went to the Cancer Center to drop off my FMLA paperwork and to find out when they could schedule me to start. They couldn't tell me so hopefully I will find out tomorrow.
Monday, July 28, 2014
Technology can be great
If I can figure out how to master the setup of this blog I'll be beyond proud of myself. So, why do I want to start a blog? Well, I'm entering a new realm and it's name is cancer. I figure this will be cheaper than therapy and if what my oncologist tells me is true I won't be feeling much like talking in the near future. And this will hopefully be something I can look back at to see how strong I really am. I'm hoping I can be strong. My two oncologists have told me how bad this journey is going to be so I'm trying to prepare myself but not sure if that's possible. We'll see. Okay, so my next post will be the story of how this diagnosis came to be.
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