Hello dear friends... I try to complain very little and keep the truly hard stuff to myself and my family. While many people post rants and groan about the monotony of every day life on social media, I choose not to (for the most part). I choose to focus on the positive and make that the display that people see about me at a glance. There's enough negative charges out there, we need some positive ones to try to balance the equation, am I right? So those of you who are my friends on social media and also the people I see in person would (hopefully) say that I try to have a positive attitude and rarely complain about the hard things in my life, I can put on a strong happy, face easily (almost too easily sometimes) and because of this many of you are under the false impression that things aren't so tough and so when I ask for prayer pain or other things, people wrongly think that this is something new, out of the ordinary. But just because I don't complain, doesn't mean that I don't hurt. The amount of physical discomfort I am in every day is astronomical. The pain in my bones is excruciating, rightly so due to the significant amount of cancer in my bones, it feels like there is someone inside my bones pushing to get out at any cost. I am on pain medication and that helps some, but I still have significant pain everyday. The cancer is all throughout my bones and it makes things like walking and sitting very painful. I stay in my bed most of the time simply because that is the most comfortable place for me to be. I am nauseous a good part of the time also like hurry-I-need-a-bucket sick. It makes it hard to eat because I know what will follow, but I do anyways and I also have medication for this but again it doesn't take it all away. Due to the neurological nature of my cancer GanglioNEUROblastoma, I also experience jerking and weird sensory hallucinations (ie. bugs crawling on my skin, feeling like there's something wet on me, etc.) and again while I take medicine for these things it doesn't take it all away. I also have lost a lot of my freedom to do things for myself that you take for granted. Do you need someone to help you bathe? To get dressed? To help you walk? To help you do your hair? To help you sit up? While I do need help with all of these things and more I have the most wonderful, the most committed, the most loving caretaker one could ask for, she's my closest friend and I am privileged to call her my mom. She takes care of me 24/7 and she NEVER complains or makes me feel like a burden and she does it with such joy. I am so thankful for her because I know without her I would have to be in a care facility. She is my main caretaker. but my dad and brothers certainly do many things to help me as well. I am blessed. Having this disease has affected me not only physically but also emotionally. Soon after I relapsed, there were many people who offered to help and who visited and who contacted me and my family on a regular basis. But after a few months, those people have slowly dropped out of my life, one by one and returned to their lives and have forgotten about me and my family's struggle which is just as hard now, if not harder, than when we first began this journey. Do I expect people to completely drop their lives and sit by my side and hold my hand 24/7? No I don't. But I would appreciate a text or a short visit or help for my family to take care of me. There have been a select few of you who have kept reaching out and helping me and my family. The majority though, have walked away from me. They don't say a reason but they leave and no longer contact me. People have failed to treat me the same and I understand that it might be hard to be around me and see me sick, I don't know if it forces them to contemplate their own mortality or if they think that cancer is contagious (FYI it's not. I promise.) or if it's just not fun to be around me anymore or what. None of these people have given me a reason, they just left. I have lost at least 75% of my friends. What I would like to say to those people is this: Imagine you were me for a minute. Imagine being in bed all day because you're too tired to do anything else, imagine going from getting numerous texts from friends a day to usually not even getting a single text. Imagine only getting to see a friend every couple of months when those same people would hang out with you frequently. Imagine that the only place you go is the hospital once a week and the nurses are closer to you than your friends you used to take for granted. And the few friends that talk to you on occasion never want to share their life or ask you about yours. I want to hear about your life because frankly, mine is kind of boring, unless you want to hear about the new flooring at the hospital. I am the same Kayli on the inside as I always was. So what changed? And finally to those select few of you that are faithful in coming to visit or contact me, you have no idea how much it means to me. And to my mom, dad, Caleb and Luke; thank you for going through this journey with me because I know it's just as hard on you guys as it is on me. So there's my complaining. I hope maybe it encourages you to reach out to someone who's a shut-in or who isn't able to do much. Even if it's hard, Jesus is always there to give you the strength you need.
7 Comments
Mindy Lowe
6/27/2015 01:36:56 pm
Thank you for sharing that. I really don't know how you don't complain all the time. I understand you feeling obligated to "be brave". Heck with that! Cancer stinks! And someone as awesome as you having cancer is unfair. In fact, it makes me d@&* mad! If I were you I'd be complaining all the time! When my dad had cancer we experienced the same drop off. Some were very close family friends. It's very disappointing.
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Jen procner
6/27/2015 03:22:52 pm
I am Areiellas mom. We don't get to come up to clinic but I do follow you on here. I know exactly what you mean. Everyone who said they would help or visit stopped after about 6 months. It seems to me that they felt this was a6 month disease and when it didn't end, they just moved on. I just want you to know that arie and I are here for you and would be happy to text with you or even visit when time allows us. We would love to be part of your cheer up team. I can even help with the medical stuff if your mom needs a break here and there. (330-717-0543 you can use my number anytime day or night. If you're up late and can't sleep, I am usually up until around 3am. Sometimes company is the best medicine. I pray for you often.
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Valerie Maples
6/27/2015 05:17:37 pm
Kayli; I am a lurker who has been praying for you for over a year, since just before the last of our children died. Nichole was only 21, and yet she lived longer than the others. I KNOW i am an "old" lady, but if you ever want to text another believer, I would be honored to share encouragement. My husband of almost 20 years, Doug, is a quadriplegic and has been vent dependent for a little over a year so i get the pretty much homebound thing. My first son, Drew, died at age 9 in 1993 from brain cancer, so I get some of that, too. His was found too late for treatment, but it is still tough missing him all these years late. You are not alone; your faith and your prayer warriors are always here even when others fall away...
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Amber Albert
6/27/2015 05:55:29 pm
Kayli, I'm sorry to hear that your friends have abandon you. You would think they would come together for you. At least I know my friends and I did for my friend Hannah when she found out she had cancer. If you ever just wanna text and chat, I'd love to chat with you. Being a stay at home mom I can text pretty much any time of day. 419-560-1619. You will continue to be in my and our family's prayers.
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Christine Adams
6/28/2015 06:00:04 am
Hi Kayli- I've responded a few times to your mom's Caring Bridge posts. We have never met. I became aware of you and your fight against cancer through Jim Thornton. I prayed for Shelly and for Bonnie throughout their illnesses. Jim would often mention you at the end of his Caring Bridge posts for Shelly. I live in upstate NY, but am in your area a few times a year. My sister lives in Dalton, has for more than 25 years. Until she went to heaven, my mom spent her last days in a nursing home in Orrville. I just wanted you to know that I pray for you and your family every single day. I have a list of folks and situations for whom I pray every day. Sometimes it gets really long. I know that if it takes me more than an hour to pray for everyone on it, I have to trim it down, because I can't commit to more time than that. So, a few times, reasoning that you have other strong prayer support, I have taken your name off. Within a day or two, I find myself "praying for Kayli" again. One of the things that I pray consistently, is that God would not give you days with unremitting pain and loneliness; but would give you even a few moments of some happy thing each day - something that makes you smile; a word of encouragement or visit from a friend; knowing that the things you've done to remember others like equipping the treatment rooms or writing you blog have had a positive impact on someone else. I am sorry that your friends and other supporters seem to have moved on with their lives; and don't remember to reach out to you. I think you are very brave to express your disappointment so eloquently here. I pray that God uses your writing to revive and raise up a strong group of supporters to be with you through the very long haul of your cancer. And I pray that God will help you offer up the pain and the loneliness as a sacrifice to Him. Christine
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Sandy Daron
6/28/2015 12:37:26 pm
Hey Sweetie girl,
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Tianna
6/29/2015 04:29:06 am
Hello Beautiful Lady!!! I wish you many blessings of God's peace and love. God bless your family too... and I send strength for your mother. much love t
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