I’m Still Here

Hey guys, sorry I’ve been quiet for so long but I didn’t think chemo would take this much out of me. I am feeling much more energized but the beginning of the chemo treatment left me just laying in the chair watching the days meld together. There have been some interesting things happen since my first treatment.

One of the best things is that my PET scan results came back clear! That means that the cancer hasn’t left my head or neck and traveled to different parts of me, such as my lungs or breasts. While waiting for the results I kept checking myself for new lumps or new sources of pain, which I didn’t find any. When the news came back that I was clear the entire room I was in, all of two other people, erupted in cheers. There was so much happiness in there, so much pure joy, and we are still glowing over the results after 3 weeks.

The Cancer Treatment and Research Institute of Tulsa is where I am now being treated at. My new doctor and the nurses there are so wonderful. They are kind, patient, and really take the time to listen to my fears or worries. There is a 24 hour triage nurse on call so if something changes, or I just get worried, I can call up there and they will help me through it or send me to the ER. Thanks to them my pain level has been under control to the point that I barely use the oxy they prescribed and only use the morphine every 8 hours.

Before my first chemo treatment I had to take a chemo class that told me what to expect, the resources available to me (like the triage nurse), and how my life has changed because of this. There were two large things that were discussed; the first one was that even though something seems small, like a fever, it no longer is. Chemo changes your body inside and out and those things that you would normally let go to get better on their own can actually do some damage to you if you don’t get it checked out. The second was the time period known as the nadir when my white and red blood count would be at the lowest. During this time I would feel the most fatigued and I would be more at risk for illness. Though I did get a white blood cell shot the day after chemo I still have to be careful.

The day of my treatment I admit that I was really nervous. Since I had no idea what was waiting for me my sleep deprived mind conjured images of a dark room, sad people…basically nothing good. Imagine my shock when they brought me back to a sunshine filled room with bright colored half walls and wavy pieces of glass, comfortable recliners, and soothing decor. I sat down in a little cubicle of color, put my feet up, and was offered a glass of ice water and a freshly warmed blanket. Later they told me that outside food or drink could be brought in so we have plans for a real fruit slush from Sonic to come in with me.

While the treatment itself went well, other than not being able to sleep thanks to steroids, I did have a pretty nasty side effect afterwards. My tongue developed a sore on each side and my throat felt like there were shards of glass dipped in acid coating it. That might sound a little dramatic to you but it is the best description possible, and when you are crying because you are so hungry from steroids but barely able to drink water you try to find some way to tell the nurse what’s wrong. I tried numbing lollipops, gargling salt water, and even cold Popsicles just held on my throat. Nothing worked at all and the cold actually hurt worse.

One of my friends on Facebook, who happens to be an ER doctor, mentioned that I try this stuff called magic mouthwash. You use a teaspoon a day, five times a day, and swish it around your mouth before either spitting or swallowing depending on your needs. It gets rid of inflammation, helps heal sores, and the more you use it the better it works. I only had to use it for a couple of days before I cried from not having anymore pain from swallowing or moving my tongue. Since I haven’t been eating much my stomach has become kind of small. Instead of forcing myself to eat more until I am uncomfortable I am eating small portions during the day until I am satisfied. If that means a whole can of soup or just half a yogurt and two egg rolls then that is what it means.

Next week is my Look Good, Feel Better class which helps women learn how to use wigs, head scarves, take care of our changing skin, and some makeup tips. I’m really excited since my skin on my face has been acting up so that part of the class interests me the most. We get free supplies afterwards to help us keep up our skin care and feeling good. It’s going to be a busy week next week with that class, disability interview, and then my next treatment. As my MIL says though, “We got this!”

My First Surgery

Last Tuesday I had my nasal biopsy. They scheduled me for 7:15 in the morning which meant I had to be there at 5:45 in case they wanted to do any last minute blood work. Since this was my first surgery you can imagine how nervous I was. Due to the pain and my nerves I was able to get about 4.5 hours of sleep that night. Oddly enough I was wide awake, energized, and ready to go once my alarm went off. I don’t think the Hubby was nearly as excited as I was though…he was mostly grumbling at having to be awake so early in the morning.

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Did you know that you are supposed to be completely naked when you go in for surgery? I can tell you that I certainly didn’t! That was one heck of a surprise when they told me to completely strip. I don’t really have a problem being naked underneath things, in fact I normally don’t wear panties unless I’m wearing a skirt or dress, but my underwear felt like a small piece of armor. A little piece of protection against the unknown. I was quite happy when the first nurse told me that I could keep my panties on if I felt more comfortable doing so. I shucked those bad boys off pretty quick when the second nurse told me why they prefer patients to be naked in the OR; apparently some patients will urinate during surgery. I did not want to wake up from my first surgery in pee soaked panties. Nope, not happening.

When I was first told to be there so soon before the actual surgery I thought that the time in between would drag on but it actually went quite fast. My MIL was with me the entire time chatting about health, cleaning, and other random tid bits. It was comfortable and I’m really glad that she was there.

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Getting wheeled back towards the OR there were a lot of nurses that were staring at me. I’m not sure if it was the swelling in my face (which was pretty bad), that I was so positive for being up so early, or it could’ve been my MIL taking so many photos of me that drew their gazes. For once in my life though the staring of other people didn’t bother me. The only thing I could think was that in a few minutes I would see my first operating room and have my first surgery.

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The fear didn’t kick in until I actually got to the room. I was still smiling and positive but there were tears rolling down my cheek as well. The room I was wheeled into was nothing like I expected. I figured it would be cold but I didn’t think it would be small, circular shaped, or that the ceramic tiles would be a light green. All of the people inside of the room were very friendly, made sure I was comfortable, and didn’t leave my side until I had passed out. I remember saying hello to Dr. Moore, having four warm blankets placed on me, and a woman rubbing my shoulder as I started at the lights. The next thing I remember is waking up in the out patient room.

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My MIL and AIL (aunt in law) were waiting for me with a small cup of ice water and a cracker. I sucked down two cups of water and didn’t even touch the cracker. In fact I think I still have that cracker somewhere…. My AIL brought me some comfortable PJ’s to wear which were so much easier to get into while I was fighting to wake up. They spoke to the doctor before we left though I was too out of it to really be part of the conversation and got to hear about it after I woke up. The most fun part of being discharged was when I woke up and was told that I was on 24 hour bed rest. I had several friends come and hang out just to make sure that I didn’t move unless I had to go to the bathroom.

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The doctors have it narrowed down to two possible cancers. The pathologist thinks that it is one kind while Dr. Moore thinks it is another. Tomorrow morning we will find out which one is causing me to be sick. It kind of feels like a game show when I think about it. “Which cancer will move on to the ultimate challenge for control over her body and which will be sent packing? Find out this Tuesday at 8:35 AM!” It’ll definitely be nice to have the full face of what I’m going to be battling instead of just a faceless, and nameless, cancer.

It’s The C Word: Part 2

When I first went in to Saint Francis the doctor looked at me and told me the exact thing I was feeling, “This is going to be a waste of time.” He said that they couldn’t do anything that Hillcrest hadn’t already done and that they couldn’t get me to see a specialist without insurance. I sighed, lamented about not bringing a book, and went ahead with everything just so that I could say I had gotten checked out again.

Thankfully I didn’t have to wait long before I was given my own room. I’m guessing that since I wasn’t a very high risk case that I didn’t need a room closest to the front of the building. I was seriously given one of the creepiest rooms I’ve ever been in. We went down a couple of hallways, around a bend, until finally we reached the end of hall and the last room. It was pretty spacious but poorly laid out, windows on the wall and door had the blinds closed, and the hallway outside of my room was dark. It kind of gave me a horror movie vibe…I definitely felt like I was wasting their time in this room.

The doctor came in a little while after being set up and asked me what had been going on. I figured this would be where he would give me some blaise speech about needing to see a specialist, that it sounded just like sinusitus, and that all he could do was give me some antibiotics. It came as a huge surprise to me when he took a look at my lymph nodes and became concerned. After gently prodding at them he told me that he was ordering another CT scan for me immediately. I just sat there flabbergasted as he left the room.

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The entire visit took about 6-7 hours, a lot longer than any of my Hillcrest visits, and thankfully I wasn’t alone for it. One of my best friends, Steph, came to visit me armed with a Dr. Pepper and a My Little Pony blanket. We snuggled under the blanket catching up on the months we’ve missed, laughing and keeping in good spirits.

When the doctor came back into the room I knew it was going to be something more serious when he pulled up a chair to sit down. If TV and movies have taught me anything it is that when a doctor sits down with his patients it is always something serious. The reason that it had taken so many hours to get the results back was because radiology had sent the images to an ENT, who was at home, to look at them as well. The radiologist and ENT both agreed that it looked cancerous and that I needed to see the specialist in the morning with or without insurance.

I’m really glad that Steph was there since I’m not sure how I would’ve taken that news by myself. I know I felt a wave of denial rush over me, a weird optimism that cushioned me from even thinking about how bad it most likely was. I had an appointment with the ENT that next morning anyway so there was still a chance that it could not be cancer. It could be a really bad infection or maybe something got stuck in there and needed to come out.

I went to see Dr. Moore over a week ago and the news I was given wasn’t what I hoped for. The results for the lymph node biopsy, which was agonizingly painful by the way, came back that it was a rare form of cancerous tumor that set up shop in my nose and had already spread to my lymph nodes. The next step was to perform a nasal biopsy to find out exactly what kind of cancer it is and what could be done about it.

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While I waited for my surgery date I worse. The swelling, the pain, my throat became more swollen and sore on the inside, and my lips have now began to go numb. Little by little the denial I had buried myself in began to crumble and crack as the reality of my situation became more apparent. The biopsy, I think, was the final straw in breaking the denial apart. I knew I had cancer but I didn’t know how serious it could really be. I mean, you don’t hear a lot about nasal cancer like you do for other types of cancer so it must be a lesser form of cancer…right?

It’s The C Word: Part 1

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As many of you know I’ve been sick since April and haven’t really been getting any better. In fact I’ve been getting steadily worse. Since the last time I posted I have gotten amazingly worse which prompted us to go and get a second opinion.

The first sign that I was getting worse was when my migraines got so bad that I began hallucinating and begging for unconsciousness. Instead of that though I got to watch a ball of leaves walk across my friend’s parking lot. When I went to the ER there were two doctors that I saw. The first one took some blood and gave me an IV cocktail that took the pain away but gave me restless legs.

The second one was extremely rude and called me crazy. Literally. She came in and asked me about my mental history, which is pretty good considering, but then she asked about my family’s mental history which is not so good. Instead of listening to me that I was sick she told me that my family’s mental illness was finally manifesting in me. When I was a little girl I used to have migraines that caused me to hallucinate as well, but she didn’t even listen to that. Glad I never have to see her again.

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The second sign that it was not getting better, and the one that scared the most people, was when blood began leaking from my tear duct. By the time we made it to the ER the blood had stopped coming out and I had no video or photographic proof to show them how bad it had been. I sat in the hospital room feeling like a crazy person to be worried about this even though I knew I should be. Thankfully I didn’t get the unprofessional doctor again but the doctor I did get didn’t do anything for me. He gave me two Popsicle sticks wrapped in tape and sent me on my way.

After that I just sat in my house waiting for the committee to approve my visit to an ENT and believing that I just had a bad sinus infection that would hopefully get better soon. A few people began to push for me to get a second opinion from another hospital, specifically Saint Francis, but I didn’t really want to go. I was rejecting it every chance I got since I don’t really like them that much thanks to how they treated the Hubby. Not to mention I didn’t want to end up with a doctor like Dr. Webb.

I finally decided to go to Saint Francis after speaking to one of my aunts, who happens to be a nurse at said hospital, about my symptoms and everyone’s concerns. I have to admit that I didn’t have any concerns right then about whether the illness could be something worse than a stubborn bacteria or virus. My aunt, however, was very concerned and after an hour and a half of talking made me promise her that I would go to Saint Francis and get a second opinion. I’m really glad that I made that promise.