Sunday, January 17, 2016
Bye-lashes!
Sunday, January 10, 2016
Mouthing Off
Also just FYI, I have no clue why the background of the text is different in various places on this post...formatting is something way over my head!!! So please forgive the eyesore that that is, thank you! :) [UPDATE: Formatting has been fixed!!! Thank you Dad!!! :D] Now on to my topic for today...
Ohhhh the beloved chemo mouth! Out of all the chemo side effects, the digestive tract (for me) has the broadest range of symptoms. For this post, I will be focusing only on the first part of the digestive system: the mouth.
Normally, all these surfaces are covered in our dear friend saliva. All that lovely drool is actually very important! Saliva provides the first step in the digestive process, helps prevent tooth decay, keeps your mouth wet and comfy, and fights germs and bad breath. Now, if you take that lovely substance away, as often happens with chemo patients, you end up with a whole host of problems (the least of which is a cranky patient).
Ok enough with the biology lesson, on to the whining! The corners of my mouth are constantly cracking (you can kind of see it in the picture, red and irritated spots). This would be fine if 1. I didn't like to eat, and 2. I didn't like to smile a lot. My mouth is so dry at moments I feel like sandpaper would be wetter! And it's amazing to me how my tongue can feel bloated, yet desiccated. This of course makes it difficult to eat (I won't go into the loss of taste buds function again), but it also makes it difficult to talk and breathe. Now, you're probably thinking, "Well silly, just close your mouth and breathe through your nose!" At times, this solution works wonders! Other times you embark on a lovely back-and-forth journey of what's the worst of two evils: dry winter air running over a dry, ulcerated tongue, or dry winter air running through a very dry (except the 3-5 times per day when it's bleeding) nasal cavity?And yes, I have a humidifier :)
Then there's the mouth sores...I haven't had these too bad thankfully! Mostly on the tongue. I've circled them in red on the picture, just in case you couldn't find them. LOL. I'm glad my tongue is not on my face!
But, it's only for one year. And there are only a few bad days each cycle! And the Chiefs won!!!
Ok well now that I've whined enough, here are some things that have helped (for anyone who may be reading this and experiencing similar fun times):
- Humidifier - I don't know for sure that it's helped, because I have used it every day and night since before I started chemo, but I am assuming it is helping and would not want to attempt NOT using it.
- Magic mouthwash - This. Stuff. Is. MAGIC!!! Literally it's magical...with a numbing agent that works very well and two other magical ingredients (I don't remember what they are or what they do), this stuff helps coat the mouth and tongue and makes you feel like you want to live again! It also helps heal up those fun little mouth sores.
- Mentholatum - Another winner! When you've been battling internal nosebleeds and causing so much friction to your nostrils that they start to bleed too, this stuff helps restore some moisture to those guys. I tried to put it on frequently BEFORE wiping my nose, to help prevent more irritation, but of course if your nose is having a bloody Ebola-like moment, ain't nobody got time for that!!! I've also found that, while recommended for external use only, putting a bit of Vaseline up in my nose a bit helps coat those bone dry passages, making breathing more comfortable.
- Burt's Bees, EOS, Softlips, Chapstick, our dental office lip balm, it all helps those dry lips and cracked mouth corners!
- Saline nasal spray - good for helping to lower the frequency of nosebleeds.
- Extra-fluoride toothpaste - With the increased risk of tooth decay, it's important to help the enamel stay strong!
- Ice cream - yes! Even without flavor, the cold and texture feels GREAT on a sore mouth!!!
- Protein/nutrition shakes - Gotta keep that nutrition up, and when it hurts to eat actual food, shakes go down easy. And with no taste buds tasting, flavor ain't an issue! All mushy foods (mashed potatoes, yogurt, etc) are all wonderful too. My mom ***correction: Dad!*** found these (pictured below) at the grocery store, and they are pretty darn yummy!!! I tried the sweet potato and beet ones also, and they were good too. You can't see him in the picture here, but there is an adorable bunny on the package too (Peter Rabbit)!
Sunday, January 3, 2016
New Year, New Side Effects!
I don't know if it was the steroids or the chemo, but the past couple of days of Round 2 found me with some fun side effects! Most of the following is small bits of things I've written over the past few days, just now complied together. The pics are from our NYE celebration, food and games! :-)
The crawling was the worst. The insects, like small house-flies, were walking on my skin. From the inside. Hundreds of tiny flies moving along the inside of my skin. Dancing along my skin with their tiny feet, brushing me with their tiny wings. Against the insider of my forehead, my temples, my eyes, and my knees. Crawling up my legs, trying to get out. I'd find the energy to move my leg, to shake them loose, but they remained.
My bones...they weren't bones. The only way I can describe how they felt is "melty." Washing my hands was bizarre, because it felt like my hands were not coming together, yet I could visibly see they were touching. When I did press them together, it felt like they melted away from each other. The skin was melting off the muscles, which were melting off the bones, which were bending and melting from themselves. Again, I could see everything was still there, still intact, but the sensations felt otherwise. This caused a massive disconnect in my brain...talk about feeling crazy! None of my other bones or joints felt normal either...my left knee seemed to be in my abdomen...but I could see this was obviously not the case! How my brain could perceive things this way I have no idea.
Foods have lost their flavors again, and now taste like textures. Mashed potatoes "taste" gritty. Protein shakes "taste" glumpy. And that's pretty much all I can get down...
I feel trapped inside myself, by my own body, by my own brain. I'm watching the world go on around me, unable to participate. When I do participate, I feel again as though I'm just watching. I see me talking and laughing, but I'm just watching. I see myself eating and moving, but it's not me - it's someone else. Even as I type this, I know I am typing it, yet I do not feel I am...
Such bizarre sensations! Literally it'll make you feel crazy...I am so thankful for good family and friends. Family who trim my nails for me when I am too weak to do so, and best friends and boyfriends who come to visit and let me sleep. And sleep. And sleep some more. All I can do is sleep it off, and stay in prayer...in faith...in hope. I'm alive and well, and will continue to fight!
Sunday, December 13, 2015
Days 4-10 of Chemotherapy
Today was just not a good day. I didn't feel too terrible (other than just tired and flu-ish), but emotionally I was a WRECK. I feel like I look terrible, as my skin has broken out all over my face, neck, chest, and back; I feel like I'm a teenager again, without the unlimited energy! I went to work for a few hours, and I was almost paranoid to get out in public. Just driving through traffic I felt like there were all these big, scary germs everywhere, waiting to attack me. But I survived, of course ;)
Day 5
A much better day today! Felt a lot better, still just tired. Work went pretty smooth, so that helps! Went out to Tequila Harry's for some Mexican food for a fundraiser for The Healing Chair - Kansas City, and I am so glad I went! I want to be at everything I possibly can be at for this charity, since that chair (recliner) seriously helped me TREMENDOUSLY after my double mastectomy! Not to mention the four women who head it up are amazing, and always know how to raise my spirits. I even ate an entire cheese quesadilla myself, and some chips! That's like, what I ate in an entire day last weekend! Not to mention it even tasted pretty good (thank you taste buds for coming back a bit)!!! Days 6-10
All these days kind of ran together, but overall they were good. My mouth had started to feel TERRIBLE on day 6 (I felt like I'd eaten a cactus!), which was frustrating. I was having trouble eating and drinking, but it mostly cleared up a couple of days later. We had our office Christmas party, which was a blast!!! I was pretty worn out by 10:00 pm, so we cut out a bit early, but it was a lot of fun! It was also good to see and spend some time with my boyfriend, who came in town for the party. I'm feeling pretty darn good today, almost back to normal!!! I accomplished some things today, which is always good...even went for a walk in the rain!!! :) I also found out that "my" healing chair (the Natalie chair) was delivered to it's 2nd recipient today! I can't wait to meet her, and I hope she feels the love from it!
Sunday, December 6, 2015
Chemo - Day 3
Woke up this morning in a total fog...as I told my family, I feel like my head is on up-side down. I feel like a Shel Silverstein character, just kind of goofy! lol. I can feel swelling of my lymph nodes in my head and neck, which is good because it means they are working! It feels almost like I have a cold, with the body aches and sore throat, but it's not too terrible. My head just feels weird, inside and out...my brain feels like there are only a few synapses connecting, and my hair follicles feel tingly and weird. So bizarre! Kinda like this guy:
I also find it interesting how sore my surgical and drain sites have been since Friday...yup, chemo is definitely working to attack those bad cancer cells!!!
I ate two pieces of cinnamon-sugar toast and an egg for breakfast, so that is good. No nausea so far, thankfully. My bright-pink and poofy steroid face has gone down a bit, and almost returned to its normal color. Yay!
Emotionally, I feel like a wreck. I am eager to return to work tomorrow, but I feel like I can't function at all! I feel like a Ferris Wheel that is hanging on by one anchor, and any one bump or stressor might knock it loose, and it will roll away, unraveling itself into bits and pieces as it goes. I am so thankful for all the love and prayers I've been blessed with, as they help tremendously! Two scriptures from my Bible readings today boosted me up this morning:
Saturday, December 5, 2015
The First Real Tragedy of Chemotherapy!
I am 24 hours out from the start of my first chemo treatment, and I have discovered the first thing I dislike about it: my beloved, delicious, warm, happiness-in-a-mug black coffee tastes like...aluminum??? Steel (stainless, of course)??? Copper!?!? It tastes like metal (my brother dearest recommended I go around licking various metal objects until I find the right metal match...lol). It tastes nothing like my delicious coffee!!! But, of course, I'm still drinking it. Gotta power through, right?!?Le sigh.
But if that's the worst so far, I'm doing great! :) I know there are more challenges ahead, but this was the first thing to strike me as "Yup, my life is gonna be different!" I did have some major dry mouth last night, which was interesting. I've had dry mouth off and on throughout my life (between rheumatoid arthritis and various medications, I've experienced it a few times), but this was D-R-Y MOUTH!!! As in, when I woke up last night, I wasn't sure I was ever going to be able to get my mouth open! Imagine that, ME not being able to open MY big mouth!!! lol. I went and used some Biotene rinse that a friend had thoughtfully bought me, which saved the rest of the night!
Also, is it bad that I'm kind of ready for my hair to start falling out, so I can quit plucking at all these stray facial hairs that drive me batty?!?!?
On a more interesting and positive note, I opened up my Bible to do my reading for the day (I've been working on reading through the Bible this year), and my reading started with 2 Corinthians 1. Verses 3-5 jumped out at me: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." This passage gave me so much comfort, joy, and reminded me of what I am fighting for. I am fighting for my life, so that I can help others going through this same experience. I must carry on so that I can show and remind others how good God is, and how much he helps us in our times of trials and tribulations.
The rest of the day went well, I did some light yoga and went for a walk, which felt AMAZING. Now going to shower and rest up some more! Love and blessings to you all!!!
Friday, December 4, 2015
Chemo #1 - DONE!
Whew, round one of chemo is done! I'm feeling good right now, just tired of course. Nothing was painful, except for a little burning in my left shoulder briefly with one of the drugs, but not bad at all! Didn't feel like too long of a day, but I sacked out after about an hour so I slept through most of it! Initially I was really cold, I had on a hat, scarf, gloves, jacket, and a big thick quilt; but once they brought me a heated blanket and a pillow I sacked out!!!
I brought Mo (short for cheMO) today, a little dog stuffed animal that my grandma took with her to all of her chemo treatments (she went through chemo twice for ovarian cancer). It was nice to have some cute and soft to hold on to all day!!! So I definately recommend that :-)
My mom and dad were with me the whole day, and I'm so thankful they were there and got to experience it with me, and support me (and most importantly - keep me laughing!). 😂 Two of my lovely friends and coworkers came to visit, bringing snacks and scarves - two items I can't get enough of!!! It was fun visiting with and laughing with them! I know many of you want to come visit during treatments, I've got my schedule now so let me know! :-) I'm also thankful for all the love and support today, it kept my spirits up and kept me smiling all day! (7 hours). My nurses were amazing too...so thankful for them!
Now off to eat Chipotle, go for a short walk, and rest rest rest. Blessings to you all!!! 😄❤














