Category Archives: Cancer

Day 284: Houston Day 3, March 3rd, Part 1

Howdy partner! No I’m just kidding. Long time no update! Today marks our 3rd full day in Texas. I’ve got to say, I really enjoy it down here. I wouldn’t want to permanently live here, (too hot, humid) but it’s very friendly and clean. 


So here’s an update: Trevor (my father-in-law), brandon, and myself left Monday morning to drive halfway to Texas. We stayed at Wade and Sydney’s place in McCrory, Arkansas. Then we got up early, had breakfast with our dear friend Jeanie Linton at the local sonic, and headed on our way for the second half of the way to Houston. Each half takes about 8 hours, give or take a little. Thank you boys for all your driving and patience!!! 


We arrived in Houston, safe and sound, about 7pm on Tuesday evening and checked into our hotel room. One of my dad’s cousins set up some situation where we didn’t have to pay for our hotel room for a few nights and, let me tell you, this hotel, The Crowne Plaza – River Oaks, has to be one of the nicest hotels I’ve ever been. Fancy shmancy!!! 


We’re on the 9th floor and have a beautiful view of the Houston skyline. The weather this week is perfect, and I’m being taken care of like a queen. Thank you God for all your mercies and blessings, even though I don’t deserve them at all.


Next part of the update: we left Monday so as to be here as soon as possible in case they called and said I could start treatment the next day – we just wanted to be ready at the drop of a hat. Now this is where it gets confusing (I barely understand what is going on, so I’ll give you my general info): to be fully into the trial for Val-083, M.D. Anderson has to do all these checks on my data and biopsy (tissue sample of my tumor). They have to do it specifically at the their lab with their equipment because, it being a trial, everything must be ‘air tight’ – having gone through psychology research and data analysis classes I more than understand the importance of maintaining the integrity of your samples and such. Everything must be just so to ensure validity and reliability. 


Anyways, all that aside, my tissue sample that MD Anderson needed was at CHI – St. Vincent’s, where I’ve had my two surgeries. So Anderson requested the samples and so did St. Jude’s (I have no idea why? But hey, you want to see my nasty brain tumor and run some tests, go for it – if it could possibly help someone, at all, that’d be amazing!). 


So, st. Vincent’s sent a sample to st. Jude’s and to Anderson. St. Jude’s got their sample and I don’t know what happened, but something on the Anderson side of things got confused or messed up and they didn’t get the sample. So I can’t be fully enrolled in the trial until some test is run specifically here, and that test can’t be run until they receive the sample. Once they have the sample it can take up to a week for the results to come back. That being said, because it seems to have been some clerical error (nothing was our fault) everything is being expedited and we should know later today or Monday. There’s only a teensy tiny chance I wouldn’t be fully accepted into the trial. All this test we’re waiting on is to 100% confirm what we already know – that I have GBM. Kinda dumb, huh? Lol 


Now, I might be messing all that information up, but that is my understanding of it all. I try my best to remain ignorant of most all of it. I am not able to control my mind enough yet to not spiral into paranoia and depression. I’m praying a lot and am finding out more and more each day how amazing my God is. It is such a relief to be able to just leave it all with Him. All the fear, the worry, the doubt. I don’t have to carry any of it, he takes it all and instead gives me peace and calm and a stillness I can’t even begin to describe. 

Currently, we three musketeers are just hanging out here in Houston. We are working on getting in contact with my social worker to establish a more permanent living situation, because we can’t stay in a hotel for two months  straight. 


Additionally, Trevor is doing an amazing job at staying on Anderson so that they stay on their toes because they clearly are off their game. Brandon is pretty upset because I’m currently not undergoing any treatment. My surgery was January 18th and since then, nothing has been done. That makes both of us very anxious. It makes him mad too. 


Update part three: this past week, Brandon set me up an appointment with an eye doctor to help with my double vision. There were lots of tests and things, and the conclusion is this, I need glasses. Not just one pair, but 2. One pair for distance, another for closer up. Nothing is just simple, huh? They should be ready and everything sometime next week. Once I get those, my balance and wobbling should be a lot better. Currently, I’m very unstable and have to receive help just walking to the bathroom or getting in or out of the car. I use a shower chair again and a walker. That all sounds so complainy – I’m sorry. I’m just trying to update everyone fully. Glasses should improve everything, because a lot of the balance issues and such are a result of my double vision. 


Update part 4: I am not sure how long we’re going to be down here. My very loose understanding is that we’ll be here as long as we need to – that’s what dad says. Speaking of whom, I am missing my family like crazy. Nathanael has a big choir competition at RR this weekend, hardy turns 20 on the 13th. I feel like I’m missing so much! 


In the past year-ish I’ve come to realize that my mom is my best friend and it’s really difficult being away from her right now. Same thing with dad. My parents are the most important people in my life and I’m 16 hours away from them. I haven’t broken down yet, but it’s gunna happen sooner or later. I’m 23 and I want my parents! 


Now, this post has proven to be incredibly long. (12:15pm) Probably because I’ve been avoiding writing one. So I’m going to do a part 2 later tonight. Have fun with this one! 

Day 267: Valentine’s Day 

Good afternoon!

I am having a wonderful Valentine’s Day with my sweet husband. We celebrated yesterday, by going to Outback Steakhouse and then had a free stay (courtesy of my parents-in-law) at Hotel Blackhawk (where we got married in December). We watched some movies, relaxed, and got to spend some much needed quality time together where we made a rule to not talk about the’c’ word or anything in that realm. It was an amazing little escape. Plus the hotels robes are so so fluffy and comfy!:) today we’re just hanging out here at the house, eating our delicious leftovers (I like leftovers best) and preparing for our travels tomorrow. 


(I just want all the cake and sweets)

I can’t thank Brandon, my parents, my in-laws, or my God enough. I’m just so blessed.

I’m really scared about the appointment on Thursday. But I’m now looking forward to the flight and stay in Houston. I downloaded the TripAdvisor app a few days ago and have been finding free things to do nearby the hospitals areas and I found really great places to try for food. So it will be a good new experience. I was trying to distract myself, but I’m glad it turned into a little bit of something I could enjoy and look forward to. I’m anxious they’ll want me to be admitted into the hospital or want me to stay there for many days, but there’s really no use in worrying myself. Plus I’m probably just scaring myself. Why would they admit me when there are people who need the bed more? Hospitals are basically always at max capacity. Sad, but true. 

(I need more of this ^^^ in my life!)

Please pray for the three of us on our travels tomorrow. Please pray for safety, peace of mind, a good attitude, strength, and stamina, today, tomorrow and everyday. 
Prayers please! Thank you Lord for all your mercies and blessings when none of us deserve it. 

https://www.gofundme.com/24x8pfg
https://www.customink.com/g/dpw0-00aw-xav2

Day 263: Preppin’ for Texas

Howdy y’all! 

Next week, Brandon, myself, and dad are headed to Houston – MD Anderson to be precise. We’re going for ‘a second opinion’ for what the next step is.

We’re leaving on the 15th, flying out of Chicago, and flying into Houston. The appointment with whichever doctor is on the 16th. I’m pretty nervous because I have no idea of what we’re actually doing – even just getting the appointment was a big deal. I guess I have a very connected father #blessed. Even to be put on the schedule, they had to have every single one of my medical records and reports. Pretty fancy, huh? lol I feel so exclusive! lol everyone wants to know my health info.! Haha I keep having nightmares that they’re going to put in, what’s called a, “pic-line”. They hurt to put in. And I’m just a very hard stick which makes it worse and even more painful. 

I am working on controlling my mind and worry and letting God just take it all – proving to be extremely difficult. So every time I start panicking about Texas, I try to find a positive. Like, last night, this morning, I started freaking out after a pic-line nightmare. So I looked up all the vintage and retro shops in Houston. I’ve also been looking at good places to eat. Might as well try to enjoy. Make the best of a crappy situation and all. 


I don’t know what we’re doing, how long we’re staying, what’s going to happen, but I do know that everything is going to God’s plan. He has it all, so I don’t have to. My husband loves me. My parents love me. God loves me. And no one is trying to hurt me. Everyone is working their best for me. I’m so humbled and blessed. Thank you to every single person who is praying, donating, or loving me. I wish I could give each and every one of you a hug. 

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

255: post-op appointment 

Hey there,

My appointment was earlier today. As per usual, depressed. So I was bumpin’ to my new anthem, The Greatest, by Sia, while Brandon was getting us a pretzels from inside the Corrallville Mall. 


My appointment was fine. We went over options for the next step. Dr. Monga and his fellow looked at my MRI taken the morning after my surgery so I didn’t have an MRI today. We went over chemo options. Currently it’s just a waiting game … at least until Tuesday when Monga confers with other doctors at the tumor board. 

Monga is waiting to check with Smith to see if I’m able to do 1-5 more rounds of radiation. Bc to be in the 1st choice treatment option, it’s a clinical trial that requires 1-5 radiations. If I don’t qualify for that, then I do an intravenous chemo (the kind where you lose your hair) which is my worst nightmare. That’s why I’m so upset and depressed. The prospect of it almost makes me want to give up entirely and just let this take me. I’ve been working so hard to grow my hair back healthy to just have it taken away and have more poison pumped into my body…. not only poison, but I’ll have to sit there for 3-4 hours with an IV in… I’ll look grey and dead, feel sick, etc. the stereotypical chemo symptoms… why not just give up? 


I’m tired of fighting. 

I’m tired of trying.

I don’t want to anymore.

We’ll find out if I can be in the trial sometime after Tuesday and before February 14th.

I miss my dad. He won’t be home til Saturday. I miss my brothers and they’re right here. I miss my mom and she’s sitting next to me. 

I feel weak and selfish and ashamed that I’m not being more courageous and stronger. Other women go about chemo with so much more grace and poise and don’t care about losing their hair. 

I’m disappointed in life and in myself. And I’m sure God is disappointed in me right now too. Why can’t I be stronger for him. So he’s probably not going to heal me anytime soon, so as to teach me a lesson. 

Anyways, going to bed. ‘Night. 

Day 254: night before post-op appointment 

I’m really scared about my post-op appointment at Iowa City tomorrow. I mean, I’m excited to get my staples out so I can finally wash my hair, but we’ll also discuss what the next step is…. and that scares me. 


This past week and a half (whenever I got home after surgery) has been pretty great and calm and relaxing and just really uplifting. I got to see my therapist, Dr. Ricketts, two days after getting home, and that was really cathartic. We had set up the appointment before I left for surgery as a kind of placeholder that I would make it through surgery just fine and wouldn’t die.

 

But now the two weeks are up and I feel forced to snap back into the reality of my condition… blood draws, MRIs, symptom checks, bad news, etc. and I know I’m going to disappoint my doctors tomorrow – my vision is off, my walking is off… they’re not gunna be happy with that. That’s scary. Because what if that means something is terribly wrong? 


And while we’re discussing the “next step” what if they say the best option is intravenous chemotherapy? I mean, I’ll do it, but that is terrifying and horrifying.

And they told me in my email and text reminders that I wouldn’t have to do a blood draw tomorrow, but they’ve said that before and then made me still. I’ve gotten to where it doesn’t really bother me anymore but all my veins are still healing from surgery and I’m totally bruised up… painful bruises. So I’m really really dreading that.

 

And then what if my doctor wants an MRI done tomorrow? Then that’s yet another stick. And what if the MRI shows it’s all come back and I have to have surgery all over again so soon? 


I know that these are a bunch of what-ifs, and this thinking isn’t healthy, but I don’t know how to stop it…. it’s like a mind infection. 


Anyways, my nighttime medicine has thoroughly kicked in (they make me really sleepy) so I’m going to say my prayers and head to bed.

Goodnight, all! 

Day Something: Just a Quick Memo

Hey y’all; this is a really quick little blurb. 

I just wanted to say, in no way am I expecting flowers or anything, but if you are considering that, please do not. I’m not able to have the flowers in the room in icu. So that means they have to be thrown away; such a waste!!! I’d so much rather you donate to your local animal shelter and then tell me about it. 


Let’s save all the The animals!!! Just saying.

That’s it. Memo over ! 

Anna out! 😘

Day 237: Pre-Op

Brandon and I are in Arkansas, safely. Resting and visiting at his cousin’s house (the best man’s house). tomorrow morning we will check Brandon into the hotel called The Guest House that is literally right off the hospital campus. Then I will be admitted into the hospital through the ER and get all hooked up and start on steroids to prep for surgery.

I am so thankful that this surgery has been scheduled instead of like last time where it was all rushed and immediate – i didnt even get to shave my legs last time (gross!) this time, I was able to pack, I’ve showered and shaved my legs, and I have a little better understanding of what is going to happen. 

 

Brandon won’t be having to go back and forth between work and the hospital this time so he can just stay with me the whole time – which will be a huge support and comfort to me.

 

All in all, while I’m still very scared and anxious, there are a lot of little pluses and blessings to be appreciated and thankful for. I feel more prepared which puts me a little more at ease. 


Please continue to pray for peace and calm for myself and my loved ones at this time. 

Praise God for all he’s done for me through this whole experience- no pain, safe travels, a fantastic support group, family, and church family. I could go on and on.


Love, Annemarie