Sorry it’s been so long since I’ve updated, it’s been a rough last few weeks and the last thing I wanted to do was open the computer and share my experiences and feelings.
I went in on Monday June 13th to get my porta-cath placed.
I started my 1st chemo treatment on Tuesday June 14th. It wasn’t too bad that first day. It didn’t really hurt when they put the needle in my porta-cath. Brandon and my mom both came. Brandon was pretty tired from not sleeping well. Luckily he was able to curl up in the recliner and rest. My mom and I played cards. (I won). We were there for about 3 hours. When I was done, they hooked my up to my sweet fanny pack for the next 46 hours. Afterwards Brandon’s aunt and uncle dropped off food to my mom and I while they took Brandon out to eat (us girls were too tired). We ate our food at my uncles house. It was crazy how fast my neuropathy kicked in. I couldn’t drink cold drinks by the time we got to my uncles. It didn’t really affect my hands or feet much. If I drank anything cold it felt like I was choking, or like I had a horrible case of strep throat. I could feel a tiny difference when I washed my hands in cold water. But it didn’t stink like I thought it would. By the next night I was so sick. I didn’t want to move. I wasn’t nauseated, but my stomach was so uneasy that I could have thrown up. I wasn’t in any pain, just SUPER tired. I could sleep all day! Food tasted so gross. I had no appetite. I always had a “mediciney” taste in my mouth. The smell, look, texture and taste of food made me want to vomit. It would take me forever to eat half a muffin. My mom was amazing though and made me try different foods every 2 hours. If we didn’t have it, she’d go get it. I was sick from Wednesday night till about Saturday.
By Sunday the 19th I was feeling a little better. In the evenings I’d get pretty sick. Everyday got a little better! By Wednesday I had hope that I’d live a normal life again and this wasn’t the end of my life and the quality of life wasn’t going to be so bad. Thursday came around and my stomach started hurting and I got really tired again and didn’t want to move. It felt like I had stomach flu. I had a fever and diarrhea. Luckily I wasn’t throwing up. But by Saturday night (after my fundraiser auction…which I talk about later) I had thrown up about 3-4 times. I was shivering so bad that my lower back hurt SO badly. If my fever went above 101 we were supposed to call the clinic. It never went above that all week. The closest it got was 100.9. Anyways, Brandon called the clinic about (now Sunday morning). They said we needed to head to the ER. That was the last place I wanted to go. But obviously something was wrong and I couldn’t keep anything down and was super dehydrated. We made it to the ER and patiently (like always) wait for a nurse to come in and start my fluids. Finally my nurse comes in. But he was in no hurry to get my fluids going. Maybe he’s never felt this sick before? About an hour later he comes in with my stuff. As he’s setting up, the x-ray tech comes in and says he’s ready to take me back to run tests. He asks me if I can stand without passing out. I told him not really, and asked if I could get some fluids in first. He said ok, but my nurse, being the awesome nurse he is, says you can stand for a minute it’s not that bad. I wanted to kill him. I’m so sick, throwing up, in pain, passing out if I sit up and he wants to delay my fluids this much longer AND make me stand?! Idiot. Ok fine whatever. I made Brandon come with to hold me up. We come back from x-ray and waited another 15-20 mins for my awesome nurse to come in. By the time he came back in to hook me up, the CT tech comes in to take me back. I said NO! I’m sorry but I’m gonna die if I don’t get something in me. Thank goodness I knew him and he was understanding. By the time we got my fluids in and back from CT it was probably …? Too be honest I had no idea what time it was. Last thing on my mind.
Poor Brandon was falling asleep in this tiny chair, so I asked the nurse if they had a waiting room somewhere so Brandon could lay down. Before he went back we said a prayer that they wouldn’t find anything serious and that Brandon could get sleep so his body wouldn’t get sick. After he went back, I turned out my lights and tried sleeping. But didn’t sleep at all. Different people kept coming in asking questions, making me pee in a cup and giving me HUGE horse pills to choke on….I mean swallow. The DR finally came in and said I had colitis. Thank goodness nothing too serious. I was so scared they were gonna find something on the CT scan and have to do surgery again. He said they wanted to keep me over night for observation. Not excited but necessary. I got up to the floor about , and I was exhausted! I don’t remember much after that. The DR did want 2 stool samples though, so sometime in that sleepy, druggy mess I got that for them. I didn’t have an appetite at all while I was there, threw up a few more times and pooped the bed…again. In my defense I was on morphine, ambien and had horrible diarrhea and I started to get up to go and just didn’t quite make it. Sorry nurse! Well turns out I had C-diff. I don’t know a ton about it, but I know (now from experience) its painful and no fun! It’s contagious too….yiles! I finally got home today (Tuesday June 28) about 1pm. Brandon and I were sitting there and he said are you ok? I just broke down crying. I’m so tired of being sick. I hate this already. I was so optimistic at first and now this is driving me to the ground very fast. I pray so hard for His help and that I can make it through this. I pray for an appetite. I pray Brandon won’t get sick of this and hate the choice he made to marry me. I cry a lot. I’m so emotional these days. I try to stay happy and remember it’ll be ok one day and this is a huge trial in our lives but sometimes I get depressed and thing it’s not fair! My mom went home, I don’t have family here, all my friends can work, some are having kids, they’re going camping, going on vacations and here I am sick. Here I am trying to gag food down and at least maintain my weight. I’m sorry if I let people down, I’m just being honest. I know a lot of people look up to me because of my attitude, but it’s so hard to be so sick and keep a smile on my face.
9 comments:
Don't feel bad about feeling bad. You are allowed your feelings and what you're doing is extremely hard. Not very many people can relate to all the crap you've gone through and will go through. Take it one day at a time. Next summer will be different. Just chalk this one up to "trying to stay alive" and do just that.
And you don't have to smile all the time. some days are just crappy.
One thing I've found helpful in the past is to have a journal separate from your normal one (if you have one...)that you can write any thing you want to in. I had a year where I was super depressed and couldn't work for a few months because I wasn't able to and I wrote in a notebook. All sorts of ugly, unhappy things. But I don't go back and read it. It was just there to get out of my head. And since it wasn't my normal journal i didn't feel obligated to write "what I did today" or "spiritual insights" or anything I thought someone might read someday. Maybe I'll read it again when I'm up to it, for now it just sits in a box now that I don't have to use it.
Love you Jillyn. Keep hanging in there.
not sure if you read her blog but NieNie Dialogues is a good one to go to when you feel like you're going through some rough crap. She did. (you'll have to go back a year or so to read about her plane crash and what-not.)
oh goodness!!I can't believe all the crap you have to put up with. -especially that nurse, you just tell me his name and what hospital and I'll have my husband take care of that ;) and I think you still have a better attitude about everything than I would.
I'm sorry I missed your fundraiser. Gary was gone and Nic's husband was gone and I was babysitting her kids. But I want you to know that we keep you in our prayers everyday! And I would love to help out in anyway I can. Please let me know!
So I have been thinking and praying for you a lot and I have even been trying to Send my Ninja power and love to ya! I am so sorry that I don't live close but I would like to plan an adventure and come see you! Weekends are when I don't work so please let me know when I come visit you!
My Grandma Ethington said that the few days after chemo were the absolue worst. She hated those days, nauseated and stuck in the house. And she was much older than you so don't worry about your attitude.
You're in the thick of it. You know it and you are going through more than the vast majority of adults our age do. So in a way, this is a torturous (and unaksed) way of getting to be mature adult but at a young age? I can't relate to being ill on a long term basis. But I can relate to something terrible happening to you without you ever asking, deserving or wanting it. And its craptacular. You don't want to think about it, you want to be "normal" but all you can do is think about it and everything it affects. You think what you're life would be like if this and only that. What its like for those happy people who have their babies, stay at home, and don't know what its like to be you.
I may just say this synical remark: everyone looks better from the outside. There are so many struggles we don't see or know about. And when you do finally have your life where you want it, with your baby and husband, you are going to appreciate it enormously. I can't say that I appreciate my kid more than another mom, but I sure do feel that way. I think it often when I hold him in my arms that felt so empty for what seemed like so long. I reflect back at when I didn't think my life that I have now, was going to ever be possible. And I smile.
So you've definately gotten the short end of a stick. It doesn't make a lot of sense and it might not ever. But, in a year (which seems like forever) your life will in all likeliness, be back to its normal, and in 2 years it could be drastically different. You just got to get through the thick of it to enjoy its splendors. In a sense- you're getting a strong taste of the bitterness, but the sweetness will someday soon taste soo good.
I once got a peice of advice/challenge that helped- everyday try to do one thing you enjoy. It doesn't have to be physical but if you're up to it sure and it can be short. But each day try to do just one thing that you like. I had to think to what I really liked and tried to squeeze it in (read a part of abook, chocolate, played the piano, baked something, called my friends and listened to their amazing lives that they thought boring) even if you emotionally don't feel like it. You also might want to look into antidepressants if you haven't already been put on one, because in reality these next few months are very challenging and can mess with your mind.
Hang in there! We are all pulling and pushing for you!
Hey Jillyn, just wanted to say that we are still thinking and praying for you and Brandon. If you did not have bad days it wouldnt be normal. Your body is being put through a ton of crap, it's exhausted, not to mention the emotions that go with everything that is going on in your life right now. You dont have to worry about what people think and dont have to worry about if you have a smile on today or not... YOU'RE job is to get better!! That is all what everyone needs from you dont worry about anything else, trying to stay healthy is a big enough job. I know it probably feels like a strain and you feel bad for Brandon too BUT this will make you guys stronger than ever. Lean on each other, share the good and the bad days.
We love you guys, let us know if we can bring another meal... I know you cant eat much :(
a lot of time when people can see that you are REAL.. that is what they look up to. you are amazing, no matter what. you write what you want to write. even if you think you are letting "people down". cuz you arent. your triumphs, your successes, your struggles... its all real. i love you for it. keep the Faith, girl. you have ALOT of angels in heaven and on earth cheering you on. ♥
I'm glad you're being honest. You don't need to be anything but yourself. I can only imagine how hard these past few weeks have been. And when you're physically in so much turmoil, it can't help but affect you emotionally. All I can say is hang in there. You are stronger than you know. And on the days you're having a hard time, know there are people out there praying for you.
Aww Jillyn. Everyone loves your positive attitude but NO ONE expects you to breeze through this with no emotional scars. You're going through such a hard thing that most people can't even begin to imagine, yet you're not giving up. Keep praying and remember the atonement is there to help you through every type of pain and trial - it can strenghten you physically and emotionally. There are a million other things I'd like to day, all of which you have probably already heard from countless other people so I'll just leave it with the most important: WE LOVE YOU!
Jillyn, I hope you remember me, Melissa (Forsgren) Bosen. I was on Devry's blog and was shocked to come across your blog.
I am so sorry for all that you are going through. I can only imagine--and I'm sure that still does not do you justice.
You are incredible. Even in the lowest time in your entire life, you are putting your trust in and seeking comfort from our Heavenly Father. THAT is strength.
You are entitled to think (and act) however you feel in each moment of this process. Take it one moment at a time.
Pleae know that you are in my thoughts & prayers. I pray that your body will respond quickly and that you will feel comfort.
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