Redneck Update

The last Cisplatin treatment on 9/2 really knocked me down. It was my dad's "turn" to go with me but I persuaded my mom to go because anyone who knows him knows he couldn't sit in a chair beside me for 8 hours. He'd be making all kinds of excuses to leave or his phone would implode from overuse : ) My mom and I made spreadsheets to keep track of my medical bills and prescriptions while sitting there. When this is over I'll add it all up and post the cost. All I have to say at this point is people without insurance would already be in a panic. My cost with insurance would send most people into a panic.

The following day I was tired and my friends and coworkers Jeannine and Jill arrived. Jeannine is from Omaha and Jill from Sioux City. I had this big plan of barbecuing them steaks and watching them eat but I realized by noon that was not going to be happening so they were stuck going to the local Chinese restaurant. My department was having a meeting the next day and my mom took me by on the way to iv fluid/radiation and they showered me with gifts. Books, lotions, body wash, 5 gift cards, protein powder, clothing, headscarf, coffee cups and mugs, kleenex, hand sanitizer and a movie. It was good to see everyone. That evening Jill, being the efficient organizer that she is, put everything away for me before I thought to get a picture. In fact, I was so sick I didn't even get a picture of me with Jeannine and Jill. They stayed until Friday morning and it was so good to have them here. I was vomiting (even had some blood from my throat), exhausted and had a terrible headache. They took their turns rubbing my neck and shoulders and went to the store in search of something I might be able to hold down but to no avail. Even Pedialyte freezer pops burnt my throat. But the ice pack they got for my neck was a great help. We did have a good visit and I hated to see them go.

Friday afternoon my friends and coworkers Jennifer and Kylie came for a visit on their way home to Kansas City. I was still sick but I was happy they came by. I got another head, neck and back rub. I'll tell you, having nurses as friends is awesome!!! I only wish we all lived closer. Once again, I was so sick I didn't even think to get a picture of me with Kylie and Jennifer.

Picture really doesn't show how red it really is.

My headache finally went away on the weekend and the nausea subsided but I was terribly exhausted. I feel like I lost several days because I was in a fog. I now feel really good except for my mouth and throat of course. I have ulcers on the sides of my tongue and can still only get fluids down. I'm pretty limited to water and milk because everything else burns. I've noticed my ears are now ringing, worse at certain times than others and this is a side effect of the chemo. For some it goes away but for others it can be life-long.

Here's a list of some of the things I do each day to try to alleviate symptoms:
IV normal saline with Decadron (nausea and inflammation) and Zofran (nausea)
Rinse mouth with NeutraSal 4-10 times (mucositis)
Rinse and swallow Stanford suspension every 3 hours (mucositis)
Take pills in the morning: Magnesium (to prevent peripheral neurapathy), Celexa (depression), Colace (stool softener but can't eat so no result!) It's really hard to swallow pills.
Other meds: Liquid morphine every 3 hours as needed (pain), Fentanyl patch changed every 3 days (pain) Ativan every 8 hours as needed (nausea)
Brush teeth 4 times because I'm at risk of tooth decay and loss from the radiation and lack of saliva. Floss gently 2 times a day.

Rub Emu oil on my neck every couple of hours. My neck is bright red with some blisters from radiation burn. And I have a lovely 2" red strip at the back of my head where enough hair has fallen out to see my scalp. It' pretty ugly but it'll grow back. I am now a Redneck.

UGLY!

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I went to see Dr. Page yesterday morning and my parents met me there to hear the latest. He is such a nice person and I am so fortunate that Dr. Rine, my radiation oncologist, chose him. The first time I saw Dr. Rine was the day I had the second biopsy and he knew it was cancer just by looking at me. He asked me if there was a medical oncologist I preferred. I told him there was one, and named him, who I did not want because he is an a**hole. I said I wanted someone who would speak to me like I have a brain in my head and has a good bedside manner. Jackpot! Dr. Page shakes your hand when he comes in and when he leaves. A good, firm handshake while he looks you in the eye. He acts like he has all the time in the world and is a great listener. He addresses every little concern and doesn't act as if they aren't valid. I don't like to be a patient. Most nurses don't and we are usually bad patients because we don't want to admit we are sick. So telling a doctor about how you've been crying for no reason and having headaches is difficult but Dr. Page acts as if I should be complaining more and I have every right to. He's just so nice. Oh, and he was born in 1978. Good gosh, I'm getting old. That's 3 years younger than Brandi. He looks like a baby but a very intelligent baby.

I was concerned about my kidney function but I was pleasantly surprised to find out my kidneys are actually doing better now than at the beginning of August. I'm sure this can be attributed to receiving IV fluids. I showed him my left arm vein where I received the chemo and he says I have phlebitis. It is getting better though. He thinks my headaches may be caused by the Zofran (nausea med) they are putting in my IV. So I told Sasha, the infusion center RN, that I was refusing the Zofran yesterday. She hadn't received the updated order yet and needed to document a reason why she wasn't administering it. I also asked Dr. Page if he thought the steroids they are putting in my IV fluids could be the cause of me being so emotional at times. He didn't think so but he does think I'm depressed so since I was already placed on an anti-depressant he doubled the dose. I also got my pain medication refilled. I haven't had to take it for a day since my throat is improving but he assured me things are going to get a lot worse. Oh, yea!! He said the Cisplatin (chemo) is causing my throat sores along with the radiation. Double whammy. In the information the Cancer Center gave me that wasn't in the list of side effects. When I got home I looked it up on the American Cancer Society site and sure enough. Oh geez, well looks like a long road ahead. I just have to try not to think so far ahead. Or, look further ahead, whatever mind game I have to play with myself to make it through.

Dreaded mouthpiece!
The marks are for them to line up, not target.

In front of the machine

Bolted down and ready to roll

A lot of people have asked me to describe the radiation mask so yesterday I had the tech take a couple of pictures of me.  

Eating progress

The Stanford Suspension Dr. Rine prescribed has already started healing the ulcers in my mouth and throat. Yesterday evening I was able to eat an egg and about 1/2 serving of malt-o-meal and this morning I had a whey protein drink. I was at my parents' house and my mom fixed me the egg, mashed up with miracle whip so I could hopefully get it down. They were getting ready to eat bacon, lettuce and tomato sandwiches and I looked at the tomatoes and thought that might be a good idea. STUPID!! The last thing you should put on mouth and throat ulcers is acid. One little bite and it set me on fire, burned like someone put a hot iron all over in my mouth and throat. I won't try that one again.
 

Radiation impacts

I've made it through 12 out of the planned 30 radiation treatments!! At the end of this week it will be halfway over. The radiation oncologist, Dr. Rine said they'll do another scan after 25 treatments and decide on how many more sessions based on the results. It would be nice if they said 25 was enough. So, on that note let me tell you how the radiation has impacted me. After I had the week of daily IV fluids we thought we'd try a week without and that lasted 4 days before I got dehydrated again. Not because I don't want to drink but because it is painful. If you've ever had strep throat multiply it by 100 and that's what my throat feels like. Swallowing a small drink of fluids was like trying to convince myself to stick a needle in my eye. So Monday morning I called and they started me on a liter of IV fluids every day before my radiation and also on weekends when I don't get radiation. It does make me feel better and my main concern is my kidneys. Knowing the chemo is nephrotoxic and dehydration can also lead to kidney failure I must protect my kidneys. I DO NOT want to be a dialysis patient. Dr. Rine's PA asked me if I had been offered a PEG tube (feeding tube). I'm not going there unless I have no choice.

I have also developed mucositis which is inflammation of the mucous membranes in my mouth and throat. That's the side effect of the radiation that's causing the severe throat pain. I had a mouth rinse they prescribed at the Cancer Center called Neutrasal. Neutrasal is a supersaturated calcium phosphate rinse that is supposed to prevent mucositis. I think it worked for a while in preventing it in my mouth but not my throat. It can't be swallowed. By yesterday I had ulcers all over in my mouth, on my uvula (the hangy thing at the back), beside my teeth, on the sides of my tongue and I know it had to be the same down my throat. Dr. Rine looked in my mouth and said, "Oh yeah, that's ugly". Well, that wasn't very nice! He said I needed Stanford Suspension and he'd call it in to Wesley Pharmacy. It is a mixed concoction that varies depending on what a particular pharmacy puts in it. Some places call it "magic mouthwash". One thing it contains is xylocaine for numbing. It's the consistency of syrup and you swish it all around making sure it gets on all the ulcers and then swallow it. No eating or drinking for 30 minutes. Well, it seems to be helping with the pain. But I am still only able to swallow water and milkshakes. I'm very hungry and the other night I found myself watching Food Network when it occurred to me it was torture so I changed back to HGTV. I want a steak, salad and a big baked potato in a bad way.

I've had 3 really BAD headaches in the past week, one on Saturday resulted in vomiting which sure didn't feel good on my throat but it did help my head. Dr. Rine's PA thinks they are tension headaches and I agree. Probably tension from food withdrawal! Brandi and my mom have been very helpful in relieving my headaches. My mom knows how to apply pressure to pressure points which actually works. And Brandi gives a mean back and shoulder rub. Also, on Saturday I had a one-hour full body massage. Saturday evening at the mall I had a 20-minute foot massage. Awesome!! If I won the lottery I would have my own personal masseuse on staff.

Monday I had labs drawn and the results aren't yet posted on my Cancer Center portal which means Dr. Page, my oncologist, hasn't released them. I have an appointment to see him tomorrow so maybe he's waiting for that. Hmm, makes me kind of concerned. I really want to see my lab results, especially to look at my kidney function.

Hopefully I'll start feeling better so I can update more often. I have visitors coming by this weekend and overnight visitors coming next week which really gives me something to look forward to. Thanks for all the thoughts, emails and calls from everyone. It helps more than I can tell you!

 

Saying the right thing etc.

It's kind of funny, you get diagnosed with cancer and if you aren't an introspective person you will become one very quickly. And you get to say things you want to say but you have to be careful with humor. Being a nurse I have a pretty morbid sense of humor but only those who know me well understand it. Some people have a hard time knowing what to say to a person who's been diagnosed with cancer and other people don't. Maybe the second group has practice but the truth is cancer will touch everyone at some point, either their own diagnosis or that of a family member or friend. I've had a couple of people actually tell me, "Cory, I don't know what to say." I tell them I don't either so let's just say whatever comes out our mouths. It's nice to know people are thinking of me and they care. That's all. Because really I am very fortunate to live where I have great medical care, a job, health insurance, my parents, my grandchildren, friends, air conditioning, food, pain medication, etc. Getting a diagnosis of cancer changes everything, most importantly it makes you stop and evaluate what is and isn't important. And saying the "right" thing isn't important to me.

Britton's sweet hugs

Braxton is second from the left

One person who didn't know what to say and said so is my friend Jennifer. So we just cried and got it over with. Now it's easy to talk about what's happening. Jennifer lives in Blue Springs, Missouri and is an RN Education Coordinator also. We work in the same group of 8 who cover the Kansas City Area (this includes all of Kansas, Nebraska and Iowa also). Jennifer and I worked together on deploying a couple of important projects for our group and we work very well together. She has become a very good friend to me and if she gets real tired of her kids she's going to give them to me. Jennifer was my first "cancer visitor" over the weekend. Thankfully my bathroom remodel was complete except for the mirror which arrived yesterday. Saturday morning I went to Braxton's first soccer game, had my appointment and then Jennifer came Saturday afternoon and stayed until

Me and Jennifer getting pedicures

Sunday afternoon. We watched a Robin Williams movie, World's Greatest Dad, which was really kind of strange but funny. His death is so sad. We ordered pizza and pasta from Pizza Hut. I can only open my mouth about a half inch and my jaw gets tired very quickly from chewing so the pasta worked best for me. We were in bed by 10, got up in the morning and went to my IV infusion and then ate breakfast at The Good Egg. The breakfast was awesome at the time. I ordered a western omelet which was loaded with onions and green peppers-maybe not a good idea for someone whose throat is being torched! I was at my mom and dad's later in the evening and thank goodness my mom had prevacid because it took care of the heartburn. After breakfast we went for a mani-pedi. My first pedicure ever. I watched a show once about them not cleaning those tubs and people getting MRSA so I never wanted a pedicure. Oh well, I have cancer, getting an amputated foot from getting MRSA isn't so scary so I put my feet in that tub and oh my gosh, I'm hooked. I have shiny pink toenails and beautiful feet. I have matching pink fingernails too. The final bill was $100 so this may be my last pedicure. Jennifer got purple toenails which looked very cute. We laughed about how much grinding they did on our feet to get rid of the callouses. So, thanks to Jennifer for the great visit and driving all the way here to spend time with me! And a big thank you to my mom for cleaning my house. I told Jennifer my mom likes to do that kind of stuff and it is much appreciated because when my mom cleans she not only cleans but she organizes closets, linens, does laundry and figures out things I "need" to be more organized.

My mom took me to my IV therapy and radiation appointment Monday. I got to see my radiation oncologist and we decided we would try a week without IV fluids and see how I do. I told him about my heartburn issue which continued yesterday and he said to start on Prilosec OTC. I'm really glad to try to do without the Decadron  they give me at IV therapy because it makes me really hungry and jittery. I've lost 10 pounds which is okay but I would end up gaining 50 at the rate I'm eating ice cream. Monday evening Taylor skateboarded and Lana rode her scooter over for a visit. Taylor drove us to Sonic and I ate a Molten Lava Sundae. After they left I ate an apple streusel heated up with vanilla ice cream. I was so stuffed I went to bed at 9:15. I saw Lana left over half her hot fudge sundae in my freezer. Wonder if she'd be mad if I ate it.

So today my appointment will only be for radiation. I have to stop by the Cancer Center to pick up papers my oncologist had to sign for my absence from work. My dad will be taking me. I could drive myself but I have to take liquid morphine before radiation so I can open my jaw for the dreaded mouthpiece which impairs my ability to drive. I am very excited because tonight my grandsons Braxton and Britton are going to spend the night!! I am going to take B (Braxton) to school in the morning and then we'll take b (Britton) to his sitter on my way to radiation tomorrow afternoon. I can't wait to get my hands on them. My grandchildren don't have to worry about what to say because to them I'm grandma, cancer or not.  

Nausea etc.

I woke up on the 12th, the morning after my chemo treatment and the nausea hit. I had placed a Zofran on my bedside table the night before just in case so took it and the nausea seemed to subside. I got ready and went to work. When I arrived some of my coworkers showed up at my office door with the most beautiful, thoughtful "cancer basket". I started crying because I was still very emotional after the Erbitux incident. Anyway, one of our clinic managers is a cancer survivor and she also used to be an RN at the Cancer Center. She said all the gifts in the basket were things she liked when she was going through treatment. All the items were yellow to give me some "sunshine". Another gift was a card with money for a massage or pedicure. I work with some of the nicest, most thoughtful people! There hasn't been a day since I was diagnosed that I haven't received a phone call or email from a coworker to see how I'm doing. Back to the nausea. After they all left my office I had to immediately rush to the bathroom and vomit. Then back to my office where I shut the door and realized this wasn't going to work. I called my boss and we decided I should go ahead a apply for short term disability. I spent the rest of the morning dry heaving over my trashcan with people occasionally knocking at the door to check on me. I called my parents at 2:30 and asked if they could come pick me up and take me to radiation which they did.

I was kind of worried about laying on my back, mouthpiece shoved in my mouth under a mask bolted to the table. What if I vomited? The technicians assured me they would be watching outside the room and if I stuck my hand up they would be right in. Okay, well I think I would already have aspirated by then. But I did okay, no vomiting, I just had to concentrate on the pain in my jaw and I forgot about the nausea! Afterward I got to see my radiation oncologist and he was confused by the nausea/vomiting so soon after chemo. He said it shouldn't have arrived until later. I told him I had hyperemesis gravidum during my pregnancies and he found that interesting. I do not do well with nausea. After pondering my situation he decided I should have daily IV fluids for a week with 2mg of Decadron. He also prescribed Ativan 1mg that I can take every 8 hours if needed. The combination is working so far. I've made it through 6/30 radiation treatments and although it really hurts when I have the big plastic mouthpiece in I think I've got the timing of the pain medication down so it's at it's peak action during that time. Also, it's easier to endure something when you know what to expect.

  

I'm back from the brink!

Monday, August 11 my mom drove me to my first Cisplatin treatment. I had labs drawn at 8:00 and my infusion was to start at 8:30 but they were running late and didn't start until 9:15 or so. First I had to be pre-medicated with steroids and Zofran. Then the Cisplatin was started. The RN had to stop my infusion at 3:15 so my mom and I could walk 4 blocks to make my 3:30 radiation appointment. Keep in mind she had already made s slightly longer walk at noon to get us lunch. The radiation was pretty painful. The huge hard piece of plastic they make me hold in my mouth while they smash it against my throat with the facemask is what makes it hurt.

The day went by pretty quickly. We watched QVC and HSN and before the day was over I had purchased blinds for my bathroom, 2 skirts and a jacket. We had the pleasure of talking for quite some time to the Director of Nursing who has worked there for 32 years! My reaction last week to the Erbitux made me quite the celebrity, but not the kind of recognition I would wish upon anyone. You could tell she was passionate about her job and she enjoyed educating us. She said in addition to developing antibodies to Erbitux from tick bites nickel miners also commonly have the antibodies.

It was a long day because we didn't leave Wesley until 6:45 pm and we had a shopping list to complete. So we headed for Walgreen's and bought a super-soft toothbrush, Biotene toothpaste, Biotene mouth spray  and some office items to keep everything organized. I told my mom I was going to have to designate a section of my kitchen as "The Cancer Area". 

I took a short walk over to Brandi's and back and then got ready to go to bed. I planned to get up at 6:00 am and go to work. Well that was my plan anyway.

My mommy and me
 

On the chemo





First and LAST Erbitux Treatment

After reaction

Erbitux infusion just started

Well, my first treatment didn't go so well. Brandi took me to my appointment and I had labs drawn and signed consents, listened to the nurse's explanation of what she was going to do and while she mixed the meds Brandi and I got comfortable. 

The nurse's name was Chau and she returned and started my IV. I was first pre-medicated with Benadryl and Zofran. Then, she started the test dose of Erbitux which was 50 mg to infuse over 1 hour. If all went well I would receive the remaining 350 mg over the next hour. About 45 minutes in to the test dose I felt my ears get hot. I asked Brandi if they were red and she said no. I started to itch on my stomach and at the same time I was starting to have a change in mental status. All I wanted to do was lay on the cold floor and I knew that wouldn't go over well so in my mind I knew I needed to get to the bathroom where I could lay on the floor and nobody would notice. I stood up and told Brandi I needed to go to the bathroom and I noticed a different nurse was looking at the IV pump. I asked the nurse if she could unplug it so Brandi could take me to the bathroom. Brandi looked at me, said my ears were now red and asked if I was okay. I was standing up and I told Brandi I couldn't breathe. She told the nurse something was wrong and the next thing I remember was seeing several people around me. I hesitate to tell this part because I don't want to come across as being dramatic but I was looking at myself from the corner of the room. It was strange, I was actually telling myself this is it, this is how you're going to end but it's okay, at least it doesn't hurt. Next thing I remember was hearing someone say my blood pressure was 44/32. Well, being a nurse I knew that was bad news. I was absolutely drenched in sweat. Soon afterwards my oncologist was next to me talking to me about going to the hospital which I told him I didn't want to do. He agreed to keep me there to observe me. They had given me epinephrine, solu-medrol and a liter of fluid. I was pretty out of it but I came around some from the pain I began to feel. It started with my feet, they swelled up instantly and turned bright red. It felt like someone was hitting the bottoms of my feet with a hot baseball bat. The redness and swelling moved up my calves and then my forearms and hands turned red and my hands swelled up. My face also swelled. Chau got some ice packs for my feet and explained that the Erbitux attaches to epithelial cells and that's why I was having these symptoms.

A few hours later I was at my radiation oncologist's office getting molded for my radiation mask. When I originally spoke to Nicki, who molds the radiation masks, she suggested I get something for anxiety from my family doctor prior to the appointment if I ever get claustrophobic. Well, after my experience with the Erbitux I wasn't the least bit scared of having my face covered. It wasn't bad at all. Although I had seen a finished mask I thought the molding would involve rubbing plaster on my face and I pictured straws in my nostrils so I could breathe. But it wasn't like that at all. It was like having a warm wet net wrapped around my face, like some type of facial. It felt pretty good. The only thing that wasn't very comfortable was the block they had me bite, it was like a big hard chunk of plastic. I will have to do that during the radiation treatments to protect my teeth. After Nicki molded the mask the did a scan and marked my mask where they will aim the radiation.

So, no more Erbitux for me. Only 3% of people have a hypersensitivity reaction and I had to be one of them. This means I have IgE antibodies to Erbitux and there is a link between this and tick bites. It is most common in Missouri, Tennessee, North Carolina, Virginia and Arkansas. 

The next option the oncologist will try is a traditional chemotherapy drug called Cisplatin. The side effects can be pretty bad. They will have to monitor my kidney function frequently. Since I work in the dialysis field I know this will be my number one concern as I do no want to have kidney damage. I will also have to have my hearing tested before and during treatment as one of the side effects is hearing loss. He also warned my that I will lose my hair and nausea and vomiting is very common. Ugh!!! My first treatment will be next Monday. Afterwards I will go to my first radiation treatment. I will have radiation at 3:30 every day for 30 days. The good thing is that when I get so sick I can't work at least I'll get to sleep in! 

Swollen red feet

Radiation mask molding

   

Getting Nervous

Here it is almost 1:00 am and I should be asleep but I haven't even started to get ready for bed. I know this will sound strange but I'm very excited for my first chemo treatment tomorrow. Oh, I mean today as in 7.5 hours from now. I feel like I'm finally going to get started with the business of getting better! Brandi (my beautiful, awesome, BFF daughter) will be here at 7:30 and we'll drive to the Cancer Center. I have my "cancer notebook" ready to go along with some bottled water and yogurt just in case I get hungry while sitting around watching the drip, drip, drip of the IV.

I got to see each of my grandkids this weekend. The 3 little boys played in the baby pool and with water hoses Sunday and then on the trampoline at Brandi's. They are so precious and such funny little things. Taylor came over and then I took him to Wal-Mart to buy a video game. My little buddy Lana spent the night Friday and Saturday. We walked to my mom and dad's on Friday evening and again Sunday. Saturday we went shopping and she got her hair trimmed in preparation for the start of school. When we were at the mall I saw an outfit on a mannequin and told Lana, "If I was skinny I'd buy that outfit." She said, "You will be when you lose 20 or 30 pounds." I thanked her and we both had a good laugh. When Brandi and I told Taylor and Lana about my cancer and what the doctor said to expect that was one of the things we mentioned so they won't be shocked if I do lose 20-30 pounds. Sounds like Lana is very well prepared. I'm so, so lucky to have each of them, they make me HAPPY!!

In pursuit of an appointment

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.

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.

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.