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