Category Archives: BrainTumor

Day 51: last radiation, last chemo for a while (p. 1)

So, we meet again Tuesday. Today is my last radiation. After this, I can never have radiation on my brain again. Weird huh? So if we’re all ever trapped on a desert island and were deciding who to eat, I’m pretty safe because you’d all get sick from eating radiated meat lol. And that is how my brothers mind thinks – he’s the one who told me that yesterday lol! 

Today / last night was /is my last chemo dose for a while as well. I now have 28 days off chemo, and then on the 29th day ill be taking a higher dose. I’ll take that for 5 days and then wait another 28 days and so on. This is where we hope absolutely nothing happens. During this time we want and pray for no recurrence, no weird symptoms and clean MRIs and blood panels. 

We are still going to Arkansas July 18th. We will leave here on the 18th and I have an MRI at 10am on the 19th. And unless something horrible happens, we’ll be on our way back home either the 19th or 20th. We’re going to Arkansas to check in with my neurosurgeon who would prefer to have the MRI done at his own facilities and would like to actually lay eyes on me. I don’t want to go, but I want to for sure maintain him as my neurosurgeon. Given the chances of recurrence, I will most likely be having brain surgeries for the rest of my life, no matter how long they may be, so I’d like for Dr. Krisht to be that surgeon. 

So after today, I have a few less pills to take each night, and my body can have some time to heal itself. Please pray that during this time, that nothing recurs or goes wrong, but that all the cancer is gone and stays that way. 

Dear Lord, please take this from me. If it isn’t blasphemous to say, Let this cup pass from me. If it is, forgive me. Let me be okay. Answer my petition and give me quick relief from this suffering. Let me bring glory to You through my life, and not through my suffering and death. In your Son’s name, amen.

Day 50: actually today

So my post earlier basically recapped yesterday and this morning. This one will be shorter. 

Dad has always told me that activity is the enemy of depression, so that’s what I’m trying to do. I get cozy with Brandon on the sofa, do some laundry and try to get the boys to help me clean up the house for dad. I’m so unmotivated but Brandon talked to me about how I can’t just give up. And Lord knows, Brandon is the reason I’m fighting. So if he needs me to keep fighting, I will. And I want to keep fighting because I want that time with him. So this is gross, but I don’t even feel motivated to shower or anything:/ but I’m going to make myself shower and make myself eat something. And that’s how you know Annemarie must be depressed – food doesn’t even sound good. Yikes lol. 

Dad will be home around 5 or 6 for a little while and then he’s heading back with Hardy to stay with mom I think. Then tomorrow after radiation, after mom has been discharged, Brandon, dad and myself will take mom to rehab. Dad is cancelling his patients fir tomorrow because he said he needs to help transport mom tomorrow. I think hardy and Nathanael are going to go with To help as well. A whole family effort. Brandon and I won’t be able to do it all on our own tomorrow. She’s having a very rough day and dad said she can’t even sit up in a chair without screaming from pain. He said it’s becoming apparent that her nurses are growing weary of her and that upsets dad because she can’t help that she’s in pain.

Pray hard prayer warriors. Pray for my family, pray for relief, pray for peace and understanding. Please pray without ceasing. Dear God, take this from me. I’ll keep fighting but please take this. In your Son’s holy name, amen.

Day 50: the ER

Well, yesterday was rough. I woke up with some disturbing symptoms that heavily mimicked my symptoms from my tumor before – weird vision, nausea, overall feelings of weakness…  Brandon had me email Dr. Monga and Dr. Smith. Dr Monga suggested that I bump up my steroid dose – the one we have recently been tapering down – and dr smith suggested I go to the ER just to be safe. I called dad who was in Iowa city with mom, to ask what I should do. Then dad called my neurosurgeon, Dr. Krisht, who ordered an MRI for me at a hospital here.

So, dad rushed home and drove me to the hospital where I was hooked up to an iv, given some anxiety medication, some Benadryl, and fluids. The MRI took a while, but they’re feeling so routine now that I don’t even get scared anymore. I just take a nap. They give me s warm blanket and I conk out for 20-30 minutes. 

After the MRI, the radiologist and Dr. Krisht conferred and came to the conclusion that we had tapered my steroid prematurely, and the surgery site, irritated by daily radiation, was causing some inflammation and swelling which was causing my symptoms. As far as we can see in the MRI images, there is no new re-growth or anything. Just normal post-operative swelling. Praise the Lord! It doesn’t help that this past week I’ve been so nervous and anxious and exhausted that i was feeling sick anyways. 

Because of all this, dr Krisht, dr. Monga and the ER dr have bumped my steroid back up from 1mg daily, to 4mg daily. I know it’s to help me and I won’t disobey the doctors, but I hate this steroid. I can feel it makes my arm shakier again, it makes it harder for me to sleep. But I’m going to be on it strictly for the next couple weeks.  

I hate my life so much right now. I wake up hating my life, dreading the day, looking forward only to when I can take my medicine to sleep that evening. This is all the biggest nightmare and I’m constantly woken up to be reminded it’s actually happening. I hate that I can’t even have a headache without it warranting a trip to the ER. I’m just miserable and I want to be normal again. I know it won’t ever be normal normal again, and that just breaks my heart. I just want some relief, some hope, that I’ll have many years with Brandon, that I can enjoy this holiday season around thanksgiving, and that mine and Brandon’s  wedding will be the way I’ve seen in it my head for the past year and a half.

So that was yesterday. Scared everyone. I cried like crazy. 

Today, dad is up in Iowa City with mom and he’s planning to come home around 3pm to do just a little grilling thing with Brandon and us for Independence Day. This evening Hardy will stay with mom and then Brandon will take me to my last radiation and mom will be discharged so we can take her to the rehab facility.

I just want it all to be over. I feel like I’m drowning. Each breath is a chore. Dear God, save me from this. Rescue me from this bottomless pit. Give me some relief. Please God, I beg you. In Jesus name, amen.  

Day 49: God’s Day, and the weekend is almost over

Today I’ll finally be back in church and I sure need it. I’m embarrassed to go because everything makes me cry and I don’t want people to come over and pat me on the back or anything because that makes it worse. I’d rather people just ignore it. But I understand the desire to comfort and show compassion so I shouldn’t get annoyed. 

UPDATE 9am: I don’t think I’m going to be going to church this morning – I’m feeling really sick. My vision is icky and I feel really nauseous.

The whole point of Sunday morning worship is to worship. It is not about me, it is about Him. We often forget that fact. It doesn’t matter how I feel, or how I think, but what God has commanded me to do. And I have many things to worship him for. I pray that I can keep that at the forefront of my mind. Maybe I’m completely wrong.

 1Corinthians 3:19 For the wisdom of this world is foolishness to God. As the Scriptures say, “He traps the wise in the snare of their own cleverness.”

I don’t want to seem haughty or anything in like ‘quoting Scripture’ and seeming ‘holier than thou’ . I don’t want to appear a fraud. I’m completely open. I don’t want people to think I’m trying to push my faith on anyone or make it appear I have so much knowledge or anything. That being said, this is my blog so  I’ll say what I want lol. I have been raised in a very faithful family, went to a private Christian school, and attended Harding University. So, …. 

I won’t deny my faith by any means, I just want to clarify my motives and everything, even though I know I dont have to. Does that make any sense? My faith is between myself and God. We have a relationship all our own. But i don’t want people to think I’m faking it.Maybe That is vanity? I need to ask someone about these things. 

As you’ve read before, I see Brandon as truly my biggest blessing from God. Brandon gives me a feeling of such comfort that washes over me when I’m hurting, scared, or anything that nothing else can compare to. God gives comfort in different ways to different people, but I believe He gives me comfort through Brandon. Even when we first started dating, through engagement, and now.

Because of this belief and the comfort Brandon provides, I don’t like to be away from him for very long. Not now. While dating and engagement, we really only saw each other on the weekends or long weekends, because of my schooling and his work. 

So I don’t want anyone thinking I’m a needy girl. In fact, i enjoy my space and time spent alone. That being said, in my current situation (I don’t like saying the word) I don’t like to be left alone or not have tv on in the background. I need a distraction. I just want one other person around. Brandon, dad, mom, Hardy, Jeanie, Nathanael…. No one else I really feel okay falling apart in from of. 

This post seems very all over the place and confused. I seem very all over the place and confused. I guess these posts really do reflect how I am currently because they babble and meander as I do….  I wake up each morning in a dazed horror as i realize that this isn’t just a nightmare but reality. same thing this morning, it’s like a shock when I wake up, this isn’t just a bad dream. This is happening and I can’t escape it. I feel caught firmly in death’s grip. 

This next week should be better as things slow down. Mom will be discharged Tuesday, she’ll be in a rehab facility and that should help her. I’ll be done with radiation and can try to pick up life again without daily appointments. It’ll change from daily appointments to monthly appointments. I’ll be going to OT to help me get my hand back to coordination. 

Please pray that this all goes away, that I can be healthy again. Please. 

Day 48: the long weekend

This could arguably the worst weekend of my life. I have never felt suffering like this before and hope to never again. I’ve never felt anxiety, stress, or fear like this. Never. It is Crumbling and crushing agony.

Mom will not be discharged until Tuesday as it is a long weekend. Dad is up with mom there and from everything dad has relayed to me, mom is improving greatly. On a scale 1-10, she is only describing her pain at a 3. I don’t want to raise hopes too high, as it will most likely be a back and forth thing for a while, but this is such a great thing. They no longer have her on the medicine that was making her so loopy and she apparently is doing very well in that sense. 

I am so relieved as I type this that I am crying. Never in my life have I cried from pure relief, but now is that time. 

I was having some worrisome symptoms earlier: nausea this morning, weird vision, and my head was hurting, along with my face swelling a lot and my incision was kind of throbbing. Brandon, Jeanie and I were watching a movie earlier and I got so tired I moved to the EZ  chair and literally fell asleep minutes after. As in my dad texted me 5 times and I could dreamily feel that my phone was in my hand and had vibrated but I could not open my eyes. When I finally woke up a few hours later, I had the good update about mom and could hear the lift in dads voice, the boys had headed to Iowa city to give dad a little break, and wonderful Pat Adams from our church family had brought over some delicious food. I feel much better and don’t seem to have any of those symptoms really. But let me tell you, I really worried Brandon. I worried myself too, really with the vision thing. But I think I’ve been so worried and upset and tired this past week that I’m exhausted and at my wits (of sorts) end and that has been causing these symptoms. Because those symptoms are typical of stress, but they’re also symptoms I had with my tumor so Brandon and I were very worried. 

Waking up and feeling nothing, okay has never been such a relief, and then all the other good news was a relief I didn’t know I could feel. Truly it felt like a “victory in Jesus”! It’s a relief and a tease. 

 I keep randomly having crying outbursts and breakdowns from relief, worry, and fear. I imagine this is his how my life will be for the foreseeable future. Future? What does that even mean? I have to push that awful thought away. Again, I’m feeling trapped on my island. I can’t handle ‘staying in the now’ at this point, but to say ‘tomorrow will be better’ is a sick thought riddled with fear. 

The bible says not to worry about tomorrow because it has its own worries, but that is a difficult thing. 

I realize that I’ve almost teased myself with the thought of this small joy that has made me feel so relieved, would be exponentially better if I could just be healed, if I could just not have cancer. That feels so selfish to want that, to crave it. 

Dear Lord, if I am wrong for wanting, petitioning or praying for this, pay me no mind, but Lord, heal me. Let mehave years  with my husband, my family. Use my life not my death for your glory. Please please please I beg of You.

Day 47: the end of the bad week

My dad and mom have always told me to 

Not wish my life away

And one would think given my current situation, that I would do just that. I’d work on living in the moment, enjoying each day for what it is, and to a certain extent I do. But I dont think I’m wishing my time away per se. 

Let me explain: I have always been one to look to the future, plan ahead, plan, schedule, plan some more, and that is something I love. I love structure. But, while I’m not “wishing my life away” in fact, I want to live more than absolutely anything, my Christian Chronicle interview was perfectly titled ‘I want years’….. I find myself going from distraction to distraction, on cruise control, tired. I suppose this is one of the ways cancer changes you. I don’t really want, desire anything but for this to go away, for the symptoms to stop, for God to take it away. But to actively do anything, nope. I just want things done, and there is a huge difference in that. 

I want this fight to be fought for me. I cannot do that. 

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Psalm 23:4

 I find myself reciting that in my head, obsessively. I guess if im going to be obsessive regarding anything, it should be that. 

I pray to God constantly that He give me patience, that He take this from me, that He give me strength, all these great and precious gifts, when I should know by now that God typically doesn’t just hand those qualities and blessings out, but rather gives a situation in which to acquire it. This is that situation for me, or at least, that is how I see it. Now maybe I’m all messed up doctrine-wise, so if it sounds like I’m misconstruing please correct me or come speak to me about it. 

I’m not enjoying life right now, I’m in the middle of the hardest thing I’ve ever been faced with, no I’m not enjoying,I’m enduring my life right now. I’d give away everything I have if it would take this cancer away. 

That’s enough depression leaking before bed. Night!

Day 47: round two

Waiting and waiting, this is a patient’s game. I have no patience. I’m going and going and I must endure but this game has gotten old.

I have one more radiation left, Tuesday July 5th. I cannot wait for it to be over with!!!! Victory in Jesus! I had my appointment for Dr. Day today with Dr. Smith. Unfortunately, I’m going to be bald for quite some time, months. He said he thinks by a year out that it will all be normal-ish. I don’t even know what that means anymore…

3:30pm: Currently, Nathanael, Jeanie and I are waiting in Mom’s hospital room with her. She’s really out of it. They have her on an extended release morphine and she’s very odd right now. But I prefer this for her than all that pain. Jeanie and Nathanael just left for a few minutes to go get a quick little snack (I’m not hungry), we’re gunna leave here soon and let her get some rest. The nurse had paged the doctor twice while we were there and he never came, so he’s a butt. And I’m guessing he’ll just end up coming around at rounds this evening. Bro is lucky I won’t be there because you’re messing with my mom and I don’t like it and would give him an earful. But I digress, he’s the doctor. 

4:34: we left mom just a little bit ago so that she could get some rest, Nathanael could get some food and sleep, and honestly, I’m feeling really drained, so I couldn’t stay too much longer anyways. Jeanie is such a gem: driving me to Iowa city and back and even coming to see me at all, helping around the house, enduring my silly doggies… I couldn’t ask for better friends. I’m truly blessed. Glory to God! 

We’re on our way back home now and Nathanael is fully conked out. God bless him, sweet little 14 year old. He’s doing and living through as much as a 14 year old should ever have to.

 We’re going to pick up some Chinese for dinner for all of us (minus Brandon  who is at work) and head on home. Today has been a loooong day. Dad isn’t off work until about 8 – 9pm and then he will come by the house and head to Iowa city to be with mom.  

Everyday this week has been too long. I’m definitely at my emotional and mental breaking point. Thank God I have God and the people around me that I do, because they’re holding me up through this when I can’t. 

When we get home, dinner, and chill. Maybe a movie, but we are definitely going to watch the Olympic Trials!  

Dear Lord, keep me positive, keep me strong, help me be patient, help me in general. I am breaking. I am so broken. I need You. Please heal me. Let me feel like me again. Make me whole again. Lord I petition, I beg all this in your Precious Son’s holy name, Amen.