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.
I’m writing this entry this evening rather than in the morning, because today was a lot of information, so it’s best for me to get it down quickly afterwards and my phone has been dead for most of today.
I had radiation today and Hardy took me so that he could also come see mom. Shes in so much pain and it’s hard to see her like that. I wish I could take it from her so badly. I can’t stand to see my mother like that. I won’t ever be able to unsee my beautiful mother literally shaking from the pain.
Last night her blood pressure dropped dangerously low so they’re watching her closely and since she’s a diabetic, carb monitoring is crucial. Well, because in this surgery, they cut through her neck muscles, even just chewing, swallowing, eating mechanisms are hard. So getting her nutrition is difficult. She’s on fluids and everything, and we ordered her some food, but she didn’t want it. It hurt her to try. Please pray earnestly for her. Pray for my mom!
Sooo…. I asked her nurse if they could order her some Ensure drinks. They gave them to me in the hospital when I had no appetite (funny huh?) because they have full nutrition and it’s just a like creamy chocolate milk, and she can easily pull it through a straw. I didn’t get to see her try it, but I pray to God that she liked it and that that gave her some relief and nourishment.
On the positive side, her incision looks great. It looks healed already if you could believe it. Coming from someone who can’t handle looking at needles, I saw her incision: It’s a big mean incision, but it’s pink and looks like a scar with some staples/stitches on it.
Additionally, because mom does and was working on before, her little exercises for her neck and shoulders, those muscles were strong so it made the surgery more painful, it hurts her more now, but her nurse, Tiffany, said that will make them heal faster. So there is a positive in this!
Hardy is staying with mom tonight because dad really has to go to work tomorrow and honestly, he needs a break. He’s worn out from everything but he won’t stop going, he’s still exhausted from everything with me, constantly researching ways to help me or keep me alive. And then he’s wearing himself ragged with his job and being such a great husband to my mother. I couldn’t ask for a better example for marriage.
I’ve never seen someone research as hard and thoroughly as my father, and a researcher is all I wanted to be before all of this. He’s not sleeping well, he’s worried sick about mom, me, money, the business, and the boys, and on top of that, my father is 63 and has had a heart attack. He has to slow down. If something happens to him because of what’s happening to me, i truly don’t know how I will live, how I could try to be strong through this.
So, coming back to my point and to stop thinking so sadly, Hardy and Nathanael are on their way to Iowa City so Nathanael can see mom, and dad can come home to rest and eat some of the homemade chicken and dumplings grandma made for us. Along with fried okra. Oh and her famous sweet tea! Thank you grandma, you’re the best! And chicken and dumplings is my favorite.
This post has been super long, so I’m going to end it here, and I’ll pick up with the information from Dr. Nisely (she’s from Brazil and she’s wonderful!)
You may know that today was mom’s surgery. This is coming from my dad at 6:30pm, so if you speak to him after this or directly take what he says over me!!!
She’s finally out of surgery, she’s ok and stable, she’s not in ICU, she’s in a normal room, she’s in a lot of pain, has thrown up once, but it’s a reaction to her coming down from the anesthesia. They’re figuring out how to Manage her pain, she’s got a whole pain management team. Daddy is with her. And dad is very tired.
So, I’ve updated you on mom and dad, Brandon is at work until close tonight, the boys are out on a mowing job, the puppies are clearly anxious and confused as to why mom isn’t here (she’s their favorite) and I’m home alone watching Netflix. I’d love to say I feel relieved and in some ways I do, but I feel lonely and I want Brandon here.
I can tell I’m feeling upset somehow because I’m wanting cheesecake, and doughnuts, and Diet Coke, and gravy and cake. These are my addiction foods and when I’m feeling overwhelmed they are my go to.
I like that I’m having time by myself today, right now, and at the same time I feel too alone with my own headspace. I can feel depression creeping down my back like a creeping little spider, literally making my skin crawl from the icky thoughts that it brings. In a trigger warning way, I feel really tempted to self-harm (something I’ve struggled with in the past) but I know I shouldn’t, I know that, I’m alone, and logically because I’m on chemo pills that make it harder for my blood to coagulate and no one home here, I might as well just save sometime and kill myself lol. Don’t worry, I’m not going to!!!! Just thinking logically, that is what would happen. I’m tempted but I know I can’t, that would hurt Brandon and I won’t do that.
Like, i would be shopping with my friends right now if I could, my hair would be so healthy and long and blonde right now, my skin would be so tan and without all these stretchmarks, I’d be graduated and working my dream job at Allsteel, coming home to my perfect husband and fur-babies, I’d be helping improve my parents house so that it was better for them, using my ID degree to help them first, I’d be applying to Cornell’s DEA program for January 2017, I’d be so much further ahead in wedding planning, I’d be working out harder for the wedding, and re-reading my annual summer reading list and going to Genesius Guild productions… my life was supposed to be so different and it’s not what I want it to be right now. I keep thinking that hopefully, God-willing, next summer will be more like what I was hoping.
Pray for my mom and my family please.
It’s June 28th! Sunday! I didn’t go to morning church today because I was feeling too tired and don’t like going without Brandon, who is working today. He works until 4. We’ll go to evening church, but I know I shouldn’t use him as an excuse to not go to morning church just because I’m not social. Through this experience, I’m withdrawing, which I don’t think is a good thing, but it just is. I don’t dislike people or anything, I just don’t want to be around people very much. I find myself wanting to be alone or only with 1 or 2 people.
Today I’ve been eating healthy and working on organizing Brandon’s and my area… I think it’s coming along nicely, albeit slowly because I am not allowed to lift over 10 pounds. And it really bothers me to have to ask Brandon to do everything, and I know that has to be a lot on him as well with everything else.
Y’all know Brandon’s parents came up for Father’s Day? Well his mama took my engagement / wedding ring with her back to Arkansas so we could get the set all soldered together and resized (bc my ring doesn’t fit with all the fluid I’m holding). I know in the grand scheme of things, me getting to wear my wedding ring isn’t that big a deal, but I cannot wait to have it back on my finger. I’ve worn that ring everyday for over a year and I still find myself randomly panicking when I can’t feel it on my finger… I like the symbol and I just miss my ring. I think I’ll get it back when we go to Arkansas July 18th for my appointment with Dr. Krisht.
Tomorrow mama has her surgery. She’s really scared. I know dad is scared. I’m scared because I know they’re scared. The boys are aloof as always lol. It’s going to be a long surgery and because of the way mom metabolizes pain medication, hardly any pain medications work on her. I hate that for her. And just like infusion chemo is my biggest dread, conscious intubation is my mother’s. She won’t know until tomorrow morning if they will be doing that, and that is adding to her worry. Dear Lord, give my mom and dad peace over this, give them strength through this.
Mom and dad are leaving to go up to Iowa city tonight because her report time tomorrow is so early and it’s a fairly long drive (1 1/2 hours). So I won’t see mom right before or after her surgery…. I don’t like that. If I didn’t have this dumb cancer then I could drive myself (I love driving, the longer the better) and stay there as long as needed and do more to help. I wouldn’t have all these appointments
At any rate, I can only do what I can do right now. Tuesday, Brandon and I will get to see mom finally, and I have a poop-ton of appointments. I’ve got physical therapy, occupational therapy, radiation, labs, Meeting with Dr. Monga, and meeting with Dr. Nisely (which ironically enough, my iPhone autocorrects “Nisely” to “misery” hahahaha).
Tuesday is going to stink because of all that, and I just want to get to hang out with my mom and watch cruddy hospital tv. Additionally, I’m made anxious that dad is leaving mom’s side to come to my appointments with the doctors from 1-3:30. It’s a relatively short amount of time, but speaking from experience, it feels longer when it’s your partner missing.
When I re-read this, this post sounds so negative:/ I don’t want people reading to worry or think I’m sliding emotionally into something bad. I would be lying if I said everything was completely fine, because it’s obviously not, but this blog, especially this post, is where I vent, open freely about the little thoughts that run through my head.
Please pray for mom with her surgery, for dad with moms surgery, for myself with this dumb cancer, and for Jeanie flying in Thursday. Pray thanks for all the same things. It’s wonderful that we have technology and science that have made this surgery possible, my treatment possible, and for friends to be able to see you in just a few hours. Thank you Lord for everything you give us.
Preface: as with other posts,this post has photos of some things I find relevant to conveying what I’m saying in the post, but this one also includes some images I find funny, or my obsession with kitsch…. Like 50’s -70’s Christmas. I love the 50’s -70’s but it’s best at Christmas.
Typically I don’t notice my own deficits so much, but today it’s been staring me in the face. Almost willing me to challenge it.
At the movie theatre, I struggle to go up the stairs that have an extended run (designer knowledge: on stairs, how ‘tall’ each stair is is called the rise and the ‘length’ is called the run) and going down them as well. My arm and hand seem much less shaky than last time I was at the movies (because my steroid has been tapered I believe), but the stair thing is really discouraging because i used to fly up and down those things with such ease that it’s frustrating and disheartening to have to concentrate and use the railing.
But I have such an amazing God who has blessed me with many things including: pretty solid confidence and an amazing husband who loves me. So people looking at me weird doesn’t bother me lol and Brandon walks the stairs slower and holds the railing too so I don’t feel alone in it. His thoughtfulness and love are so deep…. I don’t have to worry about him straying or leaving me even though, in this situation, he’s totally justified in it (to me at least). That alone brings me to tears. I’m so blessed that God has let me know a love so incredibly deep; to think that God loves me more than that, to try to comprehend a love deeper and bigger than that literally makes me bawl and I can’t fathom it.
The hair thing really hasn’t bothered me and doesn’t bother me in the short term but I really want my hair to be perfect for my husband and for my wedding. For it to be the way I want for the wedding I need to be able to do a hair trial, which should be happening in about a month or so then…
I really don’t like this. It’s so difficult to plan anything. God has control, but it bothers me lol. I like planning. And I’m ok with not being the prettiest, thinnest, or having the best of anything, I just want to be back to my normal. Normal Annemarie hair, normal Annemarie with normal breakouts, normal Annemarie skin that doesn’t have stretch marks all over. I’m whiny right now I guess.
I’m alive and not in pain and I’ve got today with my husband, so I can’t complain. I’m in love and happy. I just have to stay here. I have to stay in now. Because trying to plan far the future right now is not only depressing and upsetting, it’s literally impossible.
I can plan up until my wedding, and that’s as far as I can do right now. The wedding and Christmas time are my things right now. They are what I look forward to, they are what I think about when I get sad, they are what I keep myself busy with.
Today is Saturday and I’m really glad to not have to drive to Iowa city or anything:) it’s just nice to not have any appointments.
My brothers, dad and Brandon and I are going to see Independence Day 2 today and it’s going to be so much fun!
I’ve been eating much healthier for the past few days and I know it won’t show right away, but I’m glad to be trying. My physical therapy ends this Thursday and my therapist has strongly encouraged that I do strengthening yoga, which is awesome. I love yoga so being told I need to do it really doesn’t bother me, if anything, it’s great because now I can use this as a reason to have to!:) lol
I’ve been looking into getting extensions professionally put in but it’s pretty confusing since my hair hasn’t completely fallen out but in sections. So I have normal length hair in sections and no hair at all in others. What it looks like is that I need to wait until I have 1-2 inches of regrowth and then set a consultation with someone who has experience with extensions and then they’ll put them in. So I’m going to be playing the patience game until about September.
Hopefully by then I’ll have lost the fluid weight from the steroids, won’t look so chipmunky, my acne from steroids will be gone, and I’ll have slimmed down some from being healthier. I want to be pretty for Brandon, especially on his birthday, September 12th:))) so I’m going to try really hard to stick to my ‘diet’ lifestyle change, and taking care of my scalp! Lol
In conclusion for today, please pray for my mama who has surgery early Monday morning – 5am – and is in a lot of pain right now. She’s also really scared. Please pray God takes this icky cancer from me, He can do anything. And pray thanks for all the wonderful little things there are in today that God has given us. Thanks 🙂
Only 6 more radiations left! Yay! I am so excited for this leg of this journey to be done. Whilst waiting in the radiation waiting area, I was reading an old fall issue of Good Housekeeping and stumbled upon an article about a woman who had been struggling with her weight a lot, was diagnosed with cancer (breast cancer) and then after (amazingly) beating her cancer, she also conquered her weight battle and is still fighting to be a healthy strong woman.
I want to be like that…. I want to beat this cancer and beat my long-standing battle with weight and be the strong and smart wife, mama, and woman of God I know I can be.
I met with Dr. Smith today and we discussed my reactions to radiation and such… Everything is going very well! I asked him about when I can color my hair, or use growth stimulating shampoos and such. He said that I should wait a couple weeks after radiation ends, just because we want to make sure there isn’t a rash or reaction since my scalp will understandably be sensitive.
Additionally, typically after radiation ends you have a follow up MRI 1 month after, but since dad Brandon and I will be traveling to Arkansas at the end of July to see Dr. Krisht to follow up and get an MRI for him, Dr. Smith said I can get a CD copy of the MRI images in Arkansas and bring that back to him. This way I don’t have to have another MRI the week after. I’m glad because that saves my drivers time, my insurance money, and the technicians time!
I’m trying to decide between shaving all my hair off and starting over or getting tape extensions put in…. There’s a lot of thought I have to put into it, but it’s all logistics. Mom has surgery on Monday and she’s really not feeling well today. And daddy is stressed and he’s not feeling well. Please pray for both of them. Thank you!
God Bless!!! Whew! 😭 today has been such a long, great day! Today radiation was at 10:45am instead of 12:45. They had just asked me yesterday if I could move my appointment up because they were really busy today. So I had no problem with that and neither did bran!
So that was fine and dandy and done really quickly; I only have 7 radiations left. Then Brandon and I ran some errands, swung back by the house, picked up mom, and headed to….Dum dum dum dum…. Drumroll….
WEDDING FOOD TASTING!
Our wedding is at the Hotel Blackhawk and today we tested out the package we have decided on and made some final decisions. It was so delicious and great to get out with my Brandon and do some normal wedding planning things. Mama came with because she (obviously) knows more about all of this kind of stuff. Mamas input was completely helpful and welcome 🍲🍵🍽🍴😳😅😀 I’m so excited that we’re getting more and more figured out and hammered down!
We finished the tasting and came home and Brandon and I went into “food coma” lol…. Then when I woke up from my little nap, I had a moment of complete and utter panic because I thought I had slept through until tomorrow morning which would mean I missed watching Independence Day (the first one, which I’ve never seen… Ya ya, ‘I’m not American’ blah blah blah) but more seriously, that would mean I missed all my pills, and my chemotherapy pills. Thankfully, I checked my phone, saw the time and started laughing at myself and felt a great deal of relief! 😅
today was a blessed day and it was great to get radiation done early. Next week Brandon and I meet with the Social Security Office to go over some stuff… I’m not gunna lie, I don’t really understand any of it… But it has to do with benefits because I can’t work or drive currently and I’ve not worked beyond summer jobs or working for Harding University, my type of cancer has specific rules with it. it’s all kind of confusing because my case of GBM is abnormal. (Most cases are males 50+ who have worked and have money to draw from social security).
In closing, please pray for the Social Security thing, my moms surgery on Monday, and for this cancer to go away! God can do anything He wants! Pray and rejoice that my dear friend, Maegan Schmidt, is soon going to be a Murphy! Yes, fellas, Maegan’s off the market! Congratulations Maegan and Keegan! I love you and am so happy for you both! 😱🍰⭐️
Christian Chronicle Article Link: http://www.christianchronicle.org/article/i-just-want-years
Today was the cake tasting for cupcakes at the wedding. We’ve had the actual wedding cake decided on for a while and that’s all been taken care of, but the cupcakes were really difficult to figure out because no one in the Quad Cities would even try to make them, because of how much detail of fondant they require. But they’re what the entire concept of my wedding is based on. To use an interior design term, these cupcakes are my wedding’s ‘parti’. The bakery who is actually making these cupcakes is “Oh So Sweet by Tiphanie” ⭐️🌙🍰🍦🍭🎂🍫🍩🍪🍡
It was supposed to be Brandon, myself, and my mom at the tasting but Brandon doesn’t like any cake except white cake with plain white frosting so we decided that he wouldn’t be any help with making decisions in this part of wedding planning. Dad gladly took his place lol. Yum yum yum. It was great. And we got it ALL taken care of and booked and planned. I’m so happy!!! More progress on wedding stuff!
Oh yeah, and I had radiation today so…. It’s like…. 8 radiations left. These last 8 ( well 9,including today) are just a couple minutes shorter because they’re considered “boosts”. After all of this, I’m going to glow in the dark from all the radiation (you can only safely do so much lol, so I will have done all I can do at the end of this!)
Now I’m just hanging out, mom is combing through what’s left of my hair. lol and I’m looking forward to her making my favorite soup tonight. Also, a dear friend of mine is coming to visit next week, Jeanie Linton. So pray for safe travels for her!
(Beautiful Jeanie trying on her bridesmaid dress!!!)
In closing, the Christian Chronicle article came out today, here’s the link: http://www.christianchronicle.org/article/i-just-want-years
Please give it a read 🙂 Ms. Jones did a great job turning my garbled mush into a beautiful story! I’m honored to get to share my struggle with others and have people care enough to read!
Prayer Requests: mom for surgery on June 27th, Jeanie traveling next week to come visit, and that this cancer all go away. I can’t, but God can.