Monthly Archives: July 2016

Day 73: July 27th

Man, oh man it’s getting rough. I’m trying really hard to stay strong, to stay motivated but I find I’m out of steam, out of grit. I wear out after a few minutes of walking or after going up a flight of stairs. I feel like an old woman. 


I’m off the steroid now, so that’s a plus. My face swelling is going down, my acne has mostly cleared up, and I’m no longer gaining weight. My skin is getting stronger again (the steroid and chemo make it weak) so I think all those really painful weird stretch marks are very slowly getting better-ish, and Brandon has been putting a cream on them too, and I’ve ordered two wigs to wear because my self-esteem is at an all time low. I don’t even want to go out in public. I’m so ashamed of how I look, mostly because I’m embarrassed to have cancer. I know that sounds dumb, but I am. And people seeing me bald and struggling is admitting to everyone that I have it. So maybe I’m a little in denial? Idk why I feel embarrassed but I can recognize that I do. 

I find myself wanting to leave Brandon just so he won’t have to deal with this. I want him to be spending his summer with his best friend, Tyler, and with his sister and niece that he misses a lot. I want him to get to work more and be able to buy the things he wants, and not have to worry about and have a wife that needs constant care. 


The house is slowly falling apart. The boys can only do so much. Dad can only do so much. Mom and I can barely do anything. I feel like I’m back sliding…. Even doing yoga with Hardy for a meager five minutes was too much and my quads (or what’s left of them) were shaking and I had to stop because I felt like I would pass out. Things need to be dusted, vacuumed, garbage taken out, toilets scrubbed, cars need oil changes, etc….I can do what I can but it takes me forever… I loaded the dishwasher and ran it this morning, but it took me 30 minutes when it used to take 5-10.

Tension is rising in the house. I’m lazy and weak. The boys can’t be expected to do everything, they’re only 14 and 19, dad is working his butt off and then trying to pick up slack at home, and mom is in so much pain she can hardly stand to move and because she’s in so much pain she is irritable. I have no grit left in me and hearing mom cry from pain, seeing dad constantly working at full speed, is breaking me. I want so badly to give relief and I can’t. I’m the reason they’re struggling so hard, it’s because of me that there are so many more bills, it’s because of me that the house is falling apart, it’s because of me that the boys are expected to pick up slack.

I haven’t eaten for two days because I have this awful taste in my mouth. The doctor warned me that radiation could temporarily change how I taste things… It could take anywhere from 3 weeks to 2 months for it to go back to what it was. But as of now, I’m struggling, because I can feel I’m getting weaker, have no energy at all, and am getting dehydrated. But even water is stomach turning. Everything tastes terrible. On top of that the scale says I’m at the same weight. So bully for me 🙃

I’m scheduled to start OT and PT back up week after next. There were some insurance issues and me dealing with depression, I kept cancelling. I see Dr. Monga next week to start up round 2 of chemo: 5 days on, 28 days off. I’ll also get my blood checked. Then I also blew off my appointment with my psychologist this past week, so I have that next week too. I know I need to go, but it’s going to be all tears and suicidal thoughts and I don’t want to face it, though I know I must. 

I don’t even get relief when I sleep. I can’t find a comfortable position to sleep and that bad taste in my mouth infects even my dreams. 

My days currently consist of struggling not to cry, trying to find something to eat, and watching Pretty Little Liars. 

So there ya go, an update. Welcome to my sick world. Your lucky you can close this blog and escape it. God knows I wish I could. 

Evening 61: July 15th.

Today is Friday and on Monday, dad, Brandon and I will make the arduous trek to  Littke Rock, Arkansas. I’m hoping to convince Nathanael to come with us because he somehow just makes things better and keeps me positive and laughing — he’s an angel. That being said, I’m not sure I trust Hardy to care for the dogs without Nathanael, so I guess we’ll see. 

I think we’re going to get dinner at Wings To Go in Jonesboro (where bran is from) after the appointments and then drive back home. I’m trying to cut this ‘journey’ as short as possible. I just want to be back home, secure, around my mom and family and brothers and puppies. 

I’m also really embarrassed and nervous to eat at Wings to Go because that’s where I worked last summer and so much has changed about me since then. I don’t even look the same. People are going to look at me so weird or ask how I am and I’m not ok. People asking me how Iam just makes me burst into tears. 

Actually, a friend asked me yesterday if she thought this whole “c experience” has changed me and how I look at life…  and I can’t even begin to explain, describe, or fully understand how much everything has changed. I’m barely the same person and I don’t know if that’s good or not or if I like it or not. 

The main changes Ill Share with you are that my core values are honed in now — they were muddied before but they are crystal clear now. 

Additionally, another major change is that I’ve always been an easy crier but I’m an even bigger crier now. The pure kindness of strangers… The waitress topping off my coffee with a big smile, or getting a card from a stranger (like a HU faculty member) just makes me break down completely. I can’t even sing a full song in church without choking up. I just hum instead. Even seeing my brother smile at me or getting a sweet text message makes me bawl. 

Mom is in the rehab facility until July 29th and I’m missing her like crazy. I just want to hug my mom and cry and cry and cry. I miss her so much. I want us both to be better. 

I see my psychologist on July 25th. She’s an amazing woman and she already knows me well — she’s who I saw during high school and such. So I’m glad to have that background there. An established relationship.

So we leave on Monday, I have the MRI on Tuesday at 10am and then I meet with Dr. Krisht 12pm that same day. I’m not sure what we’re looking for… In fact, I think we want to just find nothing at all. That would be the hope. SO I’m going to ask a lot of all of you, anyone who reads this… 

Please please please be praying hard that this appointment shows no regrowth, that I’m still responsive to treatments and that cancer is out of me. Share this and get everyone praying. God listens to prayers, petitions. Please please please. Get anyone and everyone you can to pray. I’ve truly never been more scared about anything in my life, but I know God is going to take care of me. I just have to keep my faith in Him, even if I’m angry at him. Just pray for this MRI to be clean and clear. I am begging God for a clean bill of health. 

Day 59: perspective 

I remember sophomore year of design at Harding, learning about vantage points and perspective; learning how to sketch correctly and apply design elements accurately. So often I’d try to take the easy way out, find the easiest line and scribble away. Often missing the point of the assignment and having to re-do it anyways.

With this big, ugly, ‘c’ word, I’m now having to re-learn all of that. Not in a design sense, but in life. (I hate the c word, or GBM, or oncology… Those words make me sick) 

Let me explain a couple things that have happened in the past few days….I am seriously struggling. I am a dramatic person, and as such, all little things appear as large things to me, until otherwise proven. Additionally, my dad doesn’t read my blog because he is so busy juggling everything else (I don’t fault him for this at all!) that he doesn’t have time to sit down and read all this junk lol. So, that means that, at the end of the day, when you’ve all read my daily struggle and I’ve already broken 6 times throughout the day and I’m finally too exhausted to break again, dad doesn’t see it or know about it. So he can’t see that I’m teatering at the end of the ledge. That was addressed the other day… 
I say all this to say, the past couple days have been as close as I ever hope to get to hell. I had to go to the doctor yesterday morning because dad freaked me out that I might have pneumonia – I don’t- I have a sinus infection. So it’s mucous, coughing, sore throat, no sleep, and what’s worse? I got Brandon sick too. And he’s just as miserable as I am. Even worse, we have to make the torturous trek to Arkansas next week, Monday, to see my neurosurgeon, Dr. Krisht. Not that I’m not eternally grateful to him, but I seriously dread seeing him. I’m so incredibly terrified, I could throw up.Dad and Brandon both sat me down the other night and explained to me that I must change my perspective. I am in a war, and I cannot win unless I try, unless I want to. So I have to stop cowering in my fear, stop telling myself it’s going to kill me sbd be miserable forever, and fight for my life. Fight for my years with my family and friends, fight for my life with Brandon. 

My immediate retort to that is that, unless I know I can win (which we don’t; no one can) I don’t want to fight. I don’t want this misery and suffering anymore. Then Brandon gets upset and so does dad, and they say they won’t let me die, but I’m stubborn and ignore them and continue to bawl… This goes on for another 5-10 minutes which is ridiculous because all I’m doing now is making more mucous and wasting more tissues lol. 

Then dad calmly, yet firmly, like the amazing father he is, tells me I must change my thoughts. Every time I think I want to throw in the towel, everytime i want to indulge those creeping web-like thoughts, I must re-direct my mind. Brandon agreed. So everytime I think too far ahead, everytime I feel like I’m sinking, everytime the suffering feels like too much, everytime I feel like God is going to use my death as some kind of example or testimony, I squeeze Brandon’s hand, or squeeze my eyes shut and simply think, “I’m going to be okay.” And “God’s going to take care of me.” Which is much easier to say and think to myself than actually believe. But what’s that saying? Fake it til you make it?  I guess that’s what I’ll be doing for the foreseeable future. 

Please just pray really hard for myself and my family.

https://www.gofundme.com/24x8pfg

Day 57: Monday blues

It’s only noon and Today is not off to a good start. I guess that means it can only go up ? I took all my pills this morning and took them too quickly on an empty stomach with s bunch of water and ended up becoming a human water fountain a few minutes later… So there’s s waste of those pills. Lol I’m joking about it now, but I am utterly disgusted with myself. 


Then Brandon and I drove to Davenport to meet Anna Gambucci’s mom, Mary, to get hair for the wig she’s making me. We picked some out and that was great! Thank you Gambucci’s!

This next part gets graphic, so please proceed with caution or skip this paragraph. Shortly after we left the hair shop we were headed to see mom at the hospital and something bad happened…. All those pills, only water on my empty stomach, and WARNING GROSS: I’ve been really congested with s lot of drainage and I guess it all drained to my stomach… I threw up bile, mucous, and all my pills from this morning. All in the car. Yay. Brandon made sure I missed my MK bag, but I got it all over my seat and the floorboard.


 Idk why he loves me, especially when I’m so disgusting now, I wish I could make him stop loving me, make him divorce me. It  hurts me more than anything else that he’s seeing me like this, that he’s taking care of me so perfectly and patiently and I can’t give him anything back right now. I just have to pray for more years to give back to him. Dear God let me get better and get to enjoy what’s left of my life with Brandon and my family while giving glory to God. 

Please take this from me. God, I petition you to please stop pushing me to get stronger, more patient. Take this from me. Let me have my life back. I’m so impatient and I’m so exhausted and I’m so depressed. 


Make my faith stronger, because no matter what I’m going through, it is nothing compared to sacrificing your Son for every sinner. Thank you for the promise I have that even if I die, if I don’t get what I want in this situation, I have eternal life and relief and no more sadness or depression, in Heaven. That promise is the most precious thing in this world, thank you Lord. 

Please take this suffering from me. Take this cancer all away. Give me my hair and confidence and skin back. Please. I am begging you. 

Day 55: Saturday 

So now that radiation is done, and I’m off chemo for a while, I think I’m gunna draw back on blog posts (in case you hadn’t noticed) just because things aren’t changing as quickly from day to day. I want to enjoy as much of each summer day as I can, and you too!

So I haven’t posted for a few days, but I’ve been working on save-the-dates, getting the basement organized, eating healthy (which is pretty easy right now because I can’t taste a lot), and lots of laundry since mom is in the rehab facility. I never realized how much my mom does just day-to-day. She’s a Wonder Woman! 

Today I’m getting my head shaved which I’m happy, excited and scared for. I feel like it’s a step to recovery, but I also feel like it’s admitting defeat to radiation in this battle of the war, and I’m just scared I’m gunna look even worse. I’m scared it’ll be like this forever. And I’ll be horribly ugly and fat from the steroid for my wedding. That this cancer has ruined my dream wedding to my Prince Charming.

I’m constantly scared of everything. That my hair will finally start growing back and then we have to start this whole process over again, surgery, chemo…. But since I can’t have radiation ever on my head again, it’ll come back and take me or I’ll have to do infusion chemo (my biggest dread through all of this), and I’ll be stuck in this cancer loop forever… I have this train of thought every day. And it’s clearly dysfunctional because it makes me depressed and unmotivated and really discourages my support group so I’ve got to fight that and push forward that I’m young, and in love, and have God in my corner. 

UPDATE: 12:45pm: I got my head shaved and it feels really weird. You can tell where my hair was shaved and where radiation got rid of it, so my scalp just looks dirty 😪 but I’m going to be wearing wraps, and hats, and turbins lol. My scalp is really sensitive, like it feels like prickly – ish? Not in a bad way, but just like… I’ve never felt this skin before lol. It’s kind of freeing to not have to worry about hair, but when i see myself in the mirror I truly want to cry. 

My cheeks are so swollen they feel like they’re about to pop. Nathanael pinched my cheeks earlier and was so shocked by how they felt that he gasped and withdrew his hands like he’d been burnt. That just reinforces that it doesn’t look or feel right. I can handle being bald, I really can, I can rock the heck outta some hats, wigs, or wraps… But no amount of makeup or trying can help a chubby and/or ugly face. So I’m stuck until they can get me off this steroid that is helping me overall, but really hurting me psychologically. 

Brandon had work really early this morning and I haven’t gotten to see him yet today, and I know that’s affecting my mood. It’s hard for me to not be around him constantly now, even though before it was ok to be apart for even days at a time (long distance at school) but through this situation, I’ve become much more dependent on those around me, especially Brandon. He’s my comfort. And God is too, so when Brandon can’t be with me physically, I lean on God. And When Brandon holds my hand, a calm truly washes over me that I’ve never felt before and God can’t literally hold my hand lol. So I know I’m supposed to want God first, but I won’t lie, that is hard. I typically want him second. I’m not really sure how to work on that? 

Day 52: pretty chill, and a little bleak

It seems that evenings are my worst time. Late at night is ok, earlier in the day is ok, morning is ish, but 7-9ish is the hardest – not sure why. That seems to be when the creeping thoughts emerge and depression tries to settle in. I have to try to fight it off and that is exhausting. So I’m not really physically exhausted just mentally and emotionally, which is why I’m so anti-social and aloof. 


Today I tried to sleep in, but I’m not sleeping well. Like I’m sleeping long enough technically, but I can feel it’s not restful. I think it’s also difficult for me to get to the right level of relaxation because I can’t suck my pinky. Yes, judge me. I’ve sucked my pinky finger my entire life, but since being in the hospital and my face being numb, it feels too weird.

 

You may be thinking that’s it’s a good thing that that habit is relatively broken, and maybe you’re right, but it’s affecting my sleep and relaxation and it’s a self-soothing exercise I’ve done forever. Let’s get this out there: I’m so past being ashamed of it hsha. I was all growing up and mortified when I let it be known to Brandon, but I’m past that. It’s me. Lol When my face isn’t numb anymore, I’m sure I’ll revert back lol. But Brandon has told me he wishes I could do I now because he can tell it’s something that calms me and would help me when I start getting too in my head and upset.

Today was all laundry stuff and Brandon setting me up on WoW. Yeah, you read that right; I went and saw the World of Warcraft movie with Brandon and Zech last weekend and really liked it, and I know Brandon likes it, and it intrigued me enough i thought I’d give it a try. I can’t play effectively right now because of my arm having tremors from the steroid (it’s much better when I’m not on such a high dose of steroid). But Brandon can help me learn generals because it is an involved game, and I like getting to bond with Brandon over something he likes and that can distract me from the icky thoughts in me.


The boys and I were supposed to go see mom in the rehab facility today, but since Nathanael and I can’t drive, dad was at work as well as Brandon, it was supposed to be Hardy who took us… Well good luck trying to get him to do anything he doesn’t want to lol. So I went with dad after he got off work to see mom. And Brandon, grandma and I will go tomorrow. Mom seemed in much better spirits this evening, just more ‘zen’ and less anxious. I am thankful and glad for that for her. She’s still needing to get back into moving more, but they’re doing a fair amount of motivating with her, and it’s clear mom is determined to not sit still lol. She wants to recover. I am proud of my mom and her determination and I’m so thankful were both away from Iowa City for a while. I could have both of us never go back and be completely ok with that lol, wouldn’t miss a single thing if it was wiped off the map. I digress. Lol


Aunt Teresa came over today to help me begin writing some thank you cards and I really appreciated it and the time I got to spend with my aunt 🙂 

Other than that, it was just a calm, get things done, avoid and ignore insidious thoughts, rest day. 

Brandon just got home, and I’m really tired. So I’m gunna turn in for tonight. Please just pray for my mom for speedy recovery and endurance and pray for me as I can feel my attitude slipping and becoming bitter. I can feel the depression spider at my edges trying to creep in. Pray that God give me the strength to keep it at bay. It’s a struggle minute by minute… Anyways, thanks for reading and praying !  goodnight   

Day 51: part 2, but for real, read this one

Finished radiation. Finished chemo (for the next 28 days). I’m deficient in vitamin D and need to take a bigger supplement. Got Outback Steakhouse with Brandon to celebrate. Yes blooming’ onion. Caesar salad (to convince myself I was being healthy after eating fried onion smothered in ranch) with shrimp. Someone made our family a gigantic beautiful red velvet cake with chocolate frosting and I’m about to catch ‘da ‘betes eating all of it. And mom was discharged today and is doing well, besides the pain. 


So I’m gunna stay positive right now, eat cake,  and post this pic of a chubby bald goblin so you can see roughly what I look like lol. Today is a good day.