Monthly Archives: August 2016

Day 103: My 600lb. Life

Today is Sunday. Let’s rejoice!

I didn’t go to church this morning because I’ve been too tired to do anything… Which think is because of chemo and I’m not getting good quality sleep, but dad and Brandon think is because of chemo and depression. My doctor wants to start me on a low dose of a stimulant to maybe give me some more energy, so I stubbornly agreed to try it. 


I started occupational and physical therapy again this past Friday, and I have it again on Wednesday. It’s difficult, but I know it’s good for me and I can tell it makes Brandon and my parents happy because they don’t like seeing me depressed. The occupational therapist believes a lot of my tremor / deficit in my hand is because of my prolonged use of steroids which can’t really be helped right now, because my body needs the steroid. 


Food still tastes pretty weird. The only things that don’t taste weird are like… Cheeses, noodles, potatoes, pickles and tuna lol. Which makes it kinda difficult to stay nourished, but mom is trying really hard and made me one of my favorites the other night: beef stew (hold the jokes lol) with lots of carrots. That was great 🙂 thanks mom ❤️


Tuesday the 6th I get my blood routinely drawn to check how I’m responding to chemo, then Tuesday the 13th I get another MRI. So please join me in praying everything is good and clean and clear! 


September 12th is Brandon’s birthday, so that’s exciting. My wonderful husband is turning 25!!! A quarter of a century! What an oldie:) I love you Brandon ❤️😍❤️😍😘💋🎉🍰🎂 


 
I’m driving again which feels really great and I’m just waiting (really impatiently) for my hair to grow back from radiation. That is the biggest source of depression for me; I feel really ugly. Everyone tells me I’m not, and that I’m so strong and brave, but really,  look like a boy lol. And I’m doing just what anyone else would do – the prescribed treatments. 



I still have those awful stretch marks but I start some supplements this week to re-strengthen and thicken my skin again lol. And consistently losing weight so that should help I think! I’ve lost 20 pounds since I’ve been back in Illinois.


I went on a walk with Brandon today. I normally don’t want to do anything but I had been watching my 600lb. Life and felt motivated; so I think I will keep watching that, because I need to move more. I feel like those people in that show and I are going through similar struggles. The show emphasizes how they ate themselves to this place and I know I didn’t make myself get cancer (if that makes sense) I know it’s not my fault. But I still feel guilty, I still feel embarrassed and ashamed, and don’t want to move and am angry and depressed. So I feel like I can relate with them a lot. Maybe that’s stupid. But it’s encouraging and good motivation for me.


Dad and the boys cooked out today and dad grilled me and mom some asparagus — so so good! I absolutely love asparagus. It was grilled perfectly. Thanks daddy! ❤️

  

Zech invited Brandon and me over to grandmas house this evening; we visited with grandma some before she went to bed, and Brandon and Zech had some pizza, and we watched a show called “Southlands” — I’ve never heard of it before but it was super good. Very addicting lol. I recommend it! Thanks for having us over grandma and zechie!! ❤️❤️


Last but not least,

It’s only 97 days ’til I marry my Prince Charming!!! I am so incredibly blessed to have him by my side, not only through this struggle, but through everything up until now. And I have the beautiful promise that he’ll always stand by me. I’m glad that I get to love Brandon for the rest of my life. Thank you Brandon, I love you ❤️😍❤️😍💋

Day 98: Update 

Steroids suck! 

Let me explain lol… So I’m on hydrocortisone which is a much better steroid than I was on before. That being said, it still sucks. Anyways, Dr. Monga had set it up for me to taper it down even slower than my tapers before so that I wouldn’t go into withdrawals…. FAIL! 

My dosage was 5 pills in the morning and 5 pills in the evening, each day for 7 days and then go down to 3 pills in the morning and 3 pills in the evening. That did not work well. I was very sick on Sunday and miserable yesterday. So we just went ahead back to 5 pills yesterday evening and for the foreseeable future. And I feel just fine! I still have no appetite but mom and Brandon are doing an annoyingly thorough job of making sure I eat and drink. Because getting malnourished and dehydrated last time was the worst. And I hope and pray to God to never have to ever go back up to the infusion center to get rehydrated or anything. I think I’m suffering now, I think I’m miserable now, but I cannot fathom the misery of the people I saw in the infusion center. They are so strong. 

The bald spot on the top of my head is slowly, slowly growing little hair sprouts lol. On the left side (the side opposite of the incision) there are a few little hairs and the right side is still pretty much bare -__- but that’s kind of expected because that’s the side that received direct radiation whereas the other places were secondary radiation locations. 

I still have stretch marks allllll over my body, my back, back of my knees, armpits, and even my ankles (weird and gross right?) but I’ve been assured that this is all because of the steroid and chemo which makes your skin very weak and thin. So mom puts Palmers Cocoa Butter on all the stretch marks twice a day to help it some, so that whenever I’m off the steroid, these marks won’t be permanent. I’m going to buy some Bio-Oil because that is supposed to help. You know how permanent stretch marks are white? And new ones are like pink or purple ish ? Well all of mine are bright pink, so I’m holding out that these go away completely. Mom and dad have said that if they end up permanent, we’ll see a dermatologist about getting rid of them…. My parents are amazing. Doing anything and everything to help me feel like me, help me regain confidence. 

I have so much I want to complain about. I struggle with each entry to not just make a bullet point list of everything that cancer has taken from me, every inconveniece or problem or pain, whether physical or emotional, cancer has inflicted, of each reason I want to give up or why it’s not worth it, without a guarantee that I will get more than a little bit. But that is selfish and dumb. Me complaining doesn’t help anything, in fact it truly just makes it that much harder on me and I’m sure it makes it harder on my support group. It’s bad enough having the thoughts in my head, I don’t need them written down or out loud. 

It’s really easy to say I’m not going to complain but it’s much harder to follow through on and live. 

My days consist of laying in bed in the basement, then taking my morning medicines and heading upstairs to lay on the sofa and try to distract myself with television and games on my phone. I’m sure this lack of activity is a big contribution to me feeling like there’s no point in living but I have no energy, and I definitely don’t want to leave my house. I don’t like being away from my parents or my brothers….I don’t necessarily need to be, like, right next to them or anything, but I like knowing we’re all in the house together. Idk why. The most activity I feel like accomplishing is walking around some outside. 

Friday I have physical therapy and occupational therapy… I’ve even lost hope about that. I feel like I’ll never have my balance back completely, I’ll never be able to use my pretty hand-writing again or sketch for the career/degree I’ve worked so hard for.. I count it a positive thing dad has me on certain pills that cause alcohol to make you incredibly sick and miserable. Because I fear I would be spiraling even further than I am currently and would be a big cancerous alcoholic at this point…I’m unsure of how to turn this post in a more positive direction…. So I’ll just leave it here lol. 

Please pray hard, share this with anyone and everyone you can, that this cup pass from me ASAP. I’m desperate. I want to get back to my life, I want to enjoy my wedding, and do all the activities I can’t currently, I want to work… Please pray, pray without ceasing, because God is the only one who can fix this. 

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Evening 95: August 19th, update

Long time, no write, pals! 

I Figured I was due for a little update. So here goes: today, this evening, is my fourth night out five taking the big dose of chemo. So far it’s been pretty uneventful and easily tolerated. I haven’t had any nausea, save a little bout of it this morning, and it passed. I’ve a bit of some other gastrointestinal issues, but we won’t go into that lol. There’s no pain, so I can’t complain… Maybe that should be my new motto lol.


I haven’t had any emotional breakdowns since we switched my steroid (so I’m gunna blame it on the last icky one, Dextamethasone). That is not to say I don’t cry; I just haven’t gone to pieces. I dream every single night about my hair. I worry everyday that I won’t have 4 inches of regrowth in time for the wedding (you need at least 4 inches of regrowth to have extensions put in. I want to sketch, and type, and stir things, every single day. I have dreadful circles of those thoughts everyday. But they’re not breaking me down at the moment. I just remind myself, continually, of what my father and uncle have told me — this is a war. There will be sacrifices. It’s going to be hard and you have to fight. So I continue to have those thoughts each day, I can’t stop them and trying to is futile and is what causes me to build up until a breakdown, and then I push them away and play solitaire or research Pretty Little Liars. 

 Today mom had a big checkup with her doctor and she got THE ALL CLEAR!!!  She no longer has to wear her collar (it was causing her a lot of discomfort. Another big blessing is that the doctor told her, from her X-ray, that there is already some bone fusion happening,  which is a really great thing. I am so proud of my mom for her incredible strength and endurance. She may not realize it, but she is a major inspiration to me. I am a huge wuss with pain and blood. Example: dad tested my blood sugar tonight, just for fun, and I about passed out from seeing my blood when he pricked my finger. (Ps my blood sugars are friggin’ great, HOLLA!)  Yet my mom has to poke, and prick and prod her fingers and stomach, not just occasionally, but every single day. And no one else does it for her. She does it independently to herself. I never could do that. She hooks herself up to a pump, injects it into her body and has to carry it around with her always. And she hardly ever even mentions it. I’d complain every day. All of this is to say, to brag a bit, on the incredible strength my mom has and a thank you to her for inspiring me to be strong through my current struggle. So shout out to my beautiful mother and all the other people out there with diabetes – whether it be Type 1 or Type 2. You rock and are a some of the strongest people alive.


Additionally, tomorrow is my last day of what I will call Big Chemo 2 and then I have 28 days off. Then next week, I’m not sure which day, I get blood work, to check my blood count, and the following week I get an MRI. 

Here’s another big thank you, this one to my doctors: Dr. Wang, Dr. Nisely, Dr. Smith, Dr. Monga, Dr. Grerk snd Dr. Krisht. They answer all my questions honestly (sometimes too honestly lol. But that’s my own fault for backing them into a corner.) they give me their personal emails, they’re always supportive of me, and even share stories of hope with me. As much as I may say I don’t like them, it’s simply because of what they represent, and this team of doctors, at least for now, have saved my life. And I can never fully express my thanks to them. Even writing this and thinking about what a blessing they are to me and my family, brings me to tears. God bless each one of them.

Now, I have more to say, but I’ve taken a sleeper to help me sleep, and I’m a little loopy. So I’ll just do a second post tomorrow. 

Thank you God for every thing and person you’ve blessed me with. Thank you for helping me grow in You during this experience. Please be with all the sick and hurting and with all the kids about to start school on Monday. All this, in Jesus’ name, amen.

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Romans 12:12

Day 87: update from yesterday

Just a quick re-run of what went down last week: we were tapering (weaning) me off of Dextamethasone (a corticosteroid) that I had been on since May 5th. I started feeling very ill: nauseated, dizzy, overall feelings of weakness, and because I was nauseated I didn’t want to eat or drink anything so I became dehydrated and was lacking nutrition which made all the symptoms much worse – I went into steroid withdrawal. Suck.


I was supposed to start my next round of chemo last week, while all of this was going on, but because this round of chemo will be much stronger than the first one, Dr. Monga couldn’t start me on it while I was feeling so cruddy – he said I’d be in ICU in just a few days if we did that. 

So, dr. Monga switched me to a different steroid – hydrocortisone – which is what I was on after surgery in April – April 27th-May 3rd. And ordered an MRI for me for this past Saturday. He ordered the MRI to be sure that there wasn’t/isn’t any tumor regrowth. 


On the hydrocortisone I feel much better; more energy, not as much of a weird taste in my mouth as before, no nausea, I don’t feel weak. But we still had to do the MRI to be safe.

Yesterday we went over the MRI photos and I had to have them really break it down for me because I had no idea what I was looking at. …. There was a tinyspot that  was there post-surgery,that had changed a little in color and size. But because of radiation it could just be what’s called “pseudo-progression” or false progression – where it appears to be progressing but it’s really more like dust and debri left over after construction work. 


Previously the spot was small and white, currently the spot is slightly bigger and half white and half black. Which could be cause for concern but because I have no symptoms since switching steroids, my doctors are fairly sure that it’s just pseudo-progression or that it’s just scar tissue from surgery. 

It’s very odd to me that this thing, whatever it is, is in my skull, my brain, and I can’t feel it? Idk if that’s a blessing or not, but I’m going to choose to see it as such. 

I will start my next round of chemo (5/28 days) either late this week, or early next week—I have to wait for the pills to come from a specialty pharmacy since most pharmacies don’t just have chemo on hand lol. And normally at this point in treatment I would be getting blood work every three weeks and MRIs every 8 weeks. But because of that pesky spot, I’ll be having MRIs every 4 weeks for the foreseeable future. Thank you blue cross blue shield! Lol anyways, I’m out for now, text or comment if you have any questions lol. I don’t mind in the least. 


Please pray that this is all okay and that it’s just dying scar tissue. Also for the family of Jerry Bernauer Sr. (A member of our church) who passed away yesterday evening after a long battle with bladder cancer.

The Adulthood Shift

On my back in the night, eyes wide open, nothing but black, less scared of the darkness outside than of the darkness inside.
(My hand is still janked up so instead of being able to draw or sketch or paint to express myself, I’m forced to use words; pardon my lack of skill in this form of expression)
8/11/16

Day 80: Harding University p. 1

Let me preface this by saying this post will be a long one. I could write about Harding enough to fill a book, but I’ll leave that for another time. For now, this will just be a lengthy post about my love-hate relationship with my private Christian school. Harding has been on my mind lately – I’ve been missing it and everything about it, as well as all the people.


Where to begin? When I applied to Harding, as a wee little senior in high school, at the tender age of 17, it was the only place I applied, I was following a boy, and I was not very excited about it — I had wanted to go to Arkansas State University in Jonesboro, Arkansas because that’s where my boyfriend at the time wanted to go. Mom and dad wouldn’t allow that. If I was going to go to a state school, I was going to an Illinois state school because out of state taxes will bleed you dry lol. 


I visited a few times and was even part of that creepy U-Peers thing so I knew some other incoming freshman when I got there. I was luckier than ever, and obviously being looked out for by Marcus Thomas and God, to have gotten an amazing pot-luck roommate – Meryl Wetton ( who is newly engaged! WooHoo!!!) and even further blessed to have been put into Sears dorm (the newest renovated dorm at that time – only like one year old – on the third floor so I didn’t have to hear noisy girls all above me.


Yet another blessing I’ve been afforded was going on a design-specific trip to HUF (Harding University Florence). I was in Italy, Paris, and London for 6,8ish weeks during the summer of 2012, and while during the trip I hated it more than anything, in retrospect it was one of the most rewarding experiences of my life. I’m not someone who has many regrets … I have very very few. But one of them is being such a downer on the trip and not taking advantage of the opportunity to its fullest. Because if this, I’ve made Brandon promise to take me back there as well as London at some point. 


That fall, for the fall semester of 2012, my roommate, Meryl, went to HIZ (Harding In Zambia). That is the semester I struggled the most. Meryl was the biggest Christian influence in my life at that time and without her constantly by my side, i let my spiritual life and faith crumble. I got involved in things I shouldn’t have, with people I shouldn’t have. I’m happy to say that by 2013 I was generally back on track. Meryl was kind enough to include me with herself and her Zambia friends when they returned.

(I LIVED in the blue house all the way in the back on the left 😍) 

Spring of 2013 I was still nursing an obsession / crush with a guy at Harding I had met just before freshman year started. Thankfully, at that time, I was surrounded by people who set me straight (pretty much). And in the fall of 2013, I met the amazing man that would become my husband, as well as my best guy friend, Patrick White, all thanks to Courtney Davis. In fact, I’ve met most of my closest and dearest friends while in the bubble of Harding.


Let’s talk about Harding CT & L. I got my job as lab attendant the spring of 2012 and started in fall of 2012. I couldn’t have gotten a better job and I still recommend working in the lab to my hard working friends. It’s a very easy job that requires a lot of responsibility and self-starting / motivation. I had three bosses: Nathan, Scott, and Dave. Three very intimidating and Godly men! I respect them and like them so much. I have only good things to say about them and CT&L. I miss that job. In fact, I’d love to eventually hold one of my bosses positions. I love the labs, especially my dear Ezell lab -102 or 209. 


For now, this will be the end of this post, otherwise it would go on indefinitely. I’ll continue later. 

🎧 Always love, hate will get you every time 🎧   – Nada Surf

Romans 12:12 – rejoice in hope, endure in suffering, persist in prayer.

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Day 77: August 1

Today … What to say about today.

I’m not sure. For the past couple nights I’ve woken up at about 3 or 4am feeling really sick to my stomach, I haven’t thrown up, but it’s miserable. And yesterday, I was sick in the middle of the day, I hadn’t eaten anything because I’ve pretty much lost my appetite. It was all just stomach acid and it burnt really badly. Last night the same thing happened… I woke up at 4 and felt very sick. So I came upstairs to the livingroom. But it was terrible. I didn’t actually get sick, but I had taken a Xanax before bed, so when I woke up, I felt out of it and could barely keep my head up. Except when I put my head down, I felt terrible all over again.

Because I took a Xanax last night, I’ve been completely useless all day and have felt so icky. I’ve been taking Xanax to help me sleep because I can’t otherwise. I’m not sure why; probably because I cant suck my pinky, but I’m not sure really. 

During the day I can’t wait for night time, at nighttime I can’t wait to wake up. Im jealous when I get on Facebook and see my friends doing all these fun, outdoor things, traveling, and enjoying their normal summer activities as planned. I’ve basically unfollowed everyone on Facebook so as not to embitter myself further. 

It doesn’t help that this is terrifying. This seems to mimic how it was before… Feeling dizzy, out of it, nauseated…. 

I have an appointment with Dr. Ricketts on Wednesday… And I’m beginning to look forward to it because I keep going back and forward – feeling strong and determined or crumbling like a saltine cracker. And I need some help. I need someone to help me figure out how to cope with this continual sinking feeling. It goes in an out; feeling almost completely normal … So much so, that I almost forget I’m bald until I look in the mirror, or feeling like what ‘is the point?’ And wanting to just give up and end it myself.

I think I’m becoming dehydrated which is lending to the dizzy feeling; because I’ve got this awful taste in my mouth, it’s affected my appetite (which I suppose is good for my diet because any sweets are absolutely stomach-turning), so much so that even just water is hard to get down. 

Dad said it could be some of my meds that are making my taste be all weird and account for my loss of smell… There are so many things it could be; radiation to one’s head can cause temporary (up to 2 months) taste changes, I just got over an upper respiratory infection, my arsenal of different medications, or something entirely else.

This is, without a doubt, the most difficult thing I’ve ever had to go through. I just want my dad to hold me and let me cry. I’d sell my left arm to not have cancer. I just want it gone so so badly. I keep praying; I won’t let this destroy my faith; but I so often feel like God isn’t listening, or is saying ‘no’… And if, in the end, I’m going to die anyways, what is the point?

I’m all complaints and I feel I’ve lost all hope. I just want to spend time with my brothers and not have cancer anymore…. 

Please keep praying; I know I’m always asking; but I can’t ask anything else, it’s what I need. Please.