Let's Talk About The "D" Word
Death is a natural part of life, and we all experience it. Most of us try to ignore it, but I've always been fascinated by death. I can't figure out what I think happens during, before, and after. I was recently given some bad news. After 4 long years my cancer has progressed too much and I Most likely do not have much time left. I will never ask for a specific timeline and wouldn't listen to it anyways because doctors are not psychics and I will always believe in miracles but It has spread to liver, lungs, lymph nodes everywhere, Skin, another necrotic bleeding and ulcerated breast tumor, bones especially my entire spine making my feet completely numb and hard to walk already and last but not least the brain. Too many tumors to count or operate on and since my radiation oncologist only did one targeted radiation instead of the three we agreed upon when i only had the two tiny spots on my brain..... radiation again wouldn't save me either. If i would have known i definitely would have pushed so much harder for more treatments the first time , it makes my blood boil because he definitely dropped the ball on that one and that's ok for him because to so many of these doctors we are just a paycheck......... One of my biggest fears throughout this all. I woke up literally overnight a changed person and it is terrifying to say the least and yes i wanna talk about it. My symptoms so far have been extremely scary. I feel like i',m living inside another body. I struggle to talk and to find words, texting is even hard. I feel confused all the time, i feel like i'm talking in slow motion or walking in slow motion, i have terrible tremors, mostly in my hands, twitching all over especially my eyes, my skin is so sensitive i cant even handle an IV anymore without crying and i have always had a high pain tolerance, don't get me started on the pain. My face is so swollen its hard to see sometimes, i look in the mirror and cry looking at a face i don't recognize, i'm embarrassed to even go outside. Auditory hallucinations, swear i heard the ice cream truck for an hour the other day, constant squirming, like my whole body has restless leg syndrome and the list goes on, I start a new line of IV chemo this week in hopes that it buys me as much time as possible. I can just pray it shrinks the brain tumors because to be honest death by brain mets scares me the most. Itd be the most sudden with a stroke or massive seizure and that's a no bueno from me lol But im praying still and not going down without a fight so instead of hopping back on hospice , which is what every fiber of my being is telling me it wants. To just lay in bed, medicated and comfortable and finally rest but I am a mother and those girls are my life and I will fight until i absolutely can't anymore then hospice will be there until then i will do whatever i can to be here for however long god allows me to be. So thursday is chemo line number 5. Even with all these symptoms im dealing with already i get to look forward to the ones that come with chemo as well.....the vomiting, neuropathy, fatigue, the dreaded bone and muscle pain especially in this weather and god only knows what else. and i'm actually excited. At least i will actually be doing something i guess instead of just laying around waiting to do, i like fighting more. Shows the power of a mother's love. I will gladly suffer for however long i can just so long as i'm able to live a little bit longer for those babies i was blessed with.
Never in a million years did i think i'd be 33 having to save up and browse amazon for an urn and keepsake necklaces for my children that i think are up to my taste ( FYI: amazon has some cute urns oooooo!!! :p) I think that's one of my biggest life lessons. WE THINK WE HAVE TIME! ---- I don't know if its just me but i know we can all die at any time but for some reason i thought i would automatically make it to be in at least my 70's or 80's with many grandkids surrounding me rocking in my rocking chair arguing with my good for nothing husband but in reality so many of us don't or won't make it to see middle aged, I feel lucky to make it to 33 because so many of my loved ones have already passed years ago barely making it out of high school. I am blessed to have made it to my 30s although no amount of time will ever feel like its enough.
One of the hardest parts of having a terminal illness is nobody prepares you for how lonely it can be. Don't get me wrong the local support group sessions help but when it comes to your inner circle or family and friends , the silence can be deafening. People really just don't know what to do or say but i think talking more openly about it all makes it so much less scary. Its a good way to support whoever you may know who is dying also in my opinion. Yes, some people just dont wanna talk about it either and thats ok too but for me I wish i had more people who i could just vent to. My questions and fears and so on. I talk to my daughter Audra, who is 12 year old about death and dying. I am very open with her and try to make it age appropriate and try not to scare her which is impossible, its terryifying to watch your mother die but ive seen that talking and even laughing and joking about it has made it easier for both of us. I have lost friends because my diagnosis was too much for them to take on, cancer ghosting is a real thing, sometimes its not like the movies where friends and family band together and drop off casseroles everyday and paint your toenails, sometimes it feels like everyone disappears for one reason or the other. I think talking and normalizing death will help everyone live a little better.
Once you've accepted you are going to die one day, you start to live so much better. You automatically figure out what's important in life and stop wasting so much time that in the end wont matter. If i would've known i was going to die this young i would have done so so many things differently. I'm definitely not one of those people that will say i died without regrets. I would have spent less time working and racking up student loans and spent more time building lasting healthy relationships and friendships. Now, i find myself alone most of the time because i was "independent" i didn't need friends or anyone and now i struggle to have an emergency contact on my medical paperwork. I just went all month without a phone, using my daughters when i need to call someone because i'm basically paying for an overpriced alarm clock, going days or weeks without a text or call. I wish i had spent more time making friends, good friends! Im blessed for the ones i have now, most of them being ones i met after my diagnosis , cancer has done one thing and that was bringing total strangers into my life who have saved me in so many ways. You see the true colors of everyone around you, that's for sure. You have to prepare yourself for the people who actually get mad at you for having cancer or needing help. Can't tell you how many "friends" have gotten upset over how many gofundme donations i had gotten or the trip i was gifted for young moms with cancer or the free box of food someone dropped off. Death and cancer really makes people crazy i guess. Another regret is never sticking up for myself, at least until its too late. I see my kids now and they are so opposite thankfully, you definitely don't mess with them lol Im happy about it and know they will be just fine when i am gone. If i would've spoken up and raised a little hell and not take no for an answer maybe they would've listened harder to me when i wanted tests done to check for cancer in the first place. For almost a year doctor after doctor told me i was too young for breast cancer, its just a cyst, they are normal for girls my age..... I know my body and i knew it was cancer but i didn't want to come off as crazy or upset anyone or raise my voice.....now that just makes me wanna shake myself. Why didn't i fight harder, would it have changed anything, did i ultimately end up dying because of my own stupidity? Again you always think it cant happen to you and you have time......time runs out eventually. So learn from me and stop procrastinating. I'm the queen at it and its such a bad habit that can literally destroy your life and you not even know it
Once you realize you too are going to die you start looking at life in a whole new light it feels like. Each holiday becomes so special, always thinking its your last one you want to make it all so special, you cherish those smiles around the christmas tree a little longer, the nostalgic movies you've been watching since you were a kid seem funnier and now makes you cry, you enjoy the sky so much more, its like life has brighter colors all of a sudden. Instead of waiting until your dying, enjoy it now like that. I try to remind myself today could be my last day so cherish it and in a way dying has made living more enjoyable. I thought hearing im dying sooner rather than later now would be the worst point of my life and so terrifying and maybe i'm just still in denial....but since receiving the news, I'm not freaking out to fly to mexico for secret treatments or get more opinions from every different hospital in the US or crying uncontrollably. I, for whatever reason, feel at peace, at least for now. I'm sure this will be a roller coaster but i'm enjoying the peace while it lasts. I don't know what's going to happen when it happens but i think about how cool it'd be to see my parents and friends again. I can see my dad laughing and joking right now in my head and i'm excited. I get to go find out the big secret is what i told my daughter lol ill finally know what happens when we die. i of course told her i'm going to haunt the shit out of her and turn on all the lights all the time so she better save up for her electric bills :p Now that audra has a safe and loving home set up after i go and knowing audra and aria will have each other i can breathe and enjoy what time i have left, I cant even describe the weight that is off my shoulders knowing that my girls are going to be ok. When your dying that's all you care about, your loved ones. The worst part is having to leave your babies, because nobody will love them like you do, and you will always feel like you need to be there to protect them and comfort them, i cant stand seeing them cry or be upset, i don't want them to have to miss me but talking to them openly has definitely helped ease things a little. They see me taking things lightly and its suddenly not so scary and we can laugh about it all and i hope they continue to after i'm gone. I want them to be able to talk about how they are feeling without people turning away uncomfortable to talk about their dead mom. I hope they have people in their lives that let them talk about me and how they feel, cry about it, laugh about it, just anything that makes them feel better. But all because of these strangers who turned into family i have so little to worry about and i'm so grateful. the ultimate gift, the ability to die in peace. You know who you are and thank you. You are my godsends. I hope as a society we can start talking more about death and dying and make it less uncomfortable for everyone. It doesn't have to come down to religion, just being open about your fears and thoughts , if you know someone with a terminal or chronic illness the best way to support them if they are like me of course is to let them be open, don't get quiet and awkward once death comes into the convo. Being able to vent or cry or whatever openly helps sort out how were feeling and it feels good getting it off your chest. Plus its such a relief to have your affairs in order and you have to be able to talk about death to be able to truly do that. Talk about what you want like your making a birth plan but instead its a death plan. That way your loved ones will know what you want. Do you want to keep your organs, do you want life support or no, cremation or burial, where the hell is your birth certificate lol :p That way, hopefully many decades for you, everything will be in order and everyone will know what you want and you can focus on enjoying every day you get instead of worrying nobody is on the same page.
I hope whoever is reading this finds it helpful in some way. I think , because i never got to live long enough to make all my dreams come true that i'm trying to leave behind something meaningful to the world. I wish i had so much more time, sometimes it makes me sad, sometimes anger. I am mad at all the things i'm going to miss out on. What i wouldn't do to walk my girls down the aisle and have a mama daughter dance, see my grandbabies, get a dog, travel, all the cool new movies ill miss lol i know crazy things to think about but i do sometimes get mad at what i'm going to miss, i can easily name off what im not going to miss though lol hey, at least i'm getting away from all these assholes who cant drive around here right lol :p But,,,,, i hope this helps someone, i hope all my writings and my story will help someone. Yes, there's plenty of people who are sick of hearing me talk about cancer and dying. i was even told i have been "dying" for four years now lol apparently i didn't die fast enough for that asshole but im blessed to have been given this time. Ive lived so much more in the past 4 years than i did the whole first 33 years of my life. I have done so much and still have so much to do and i hope i get a miracle and get to live as long as possible. My girls will have such good memories with me to cherish and i had the time to leave them so many great things they will cherish their entire lives. Scrapbooks, letters, journals, pictures, videos etc. So i know whenever they are missing me i will never be too far. I've learned how to sit and enjoy the little things i never noticed before , ive learned to enjoy just living and how lucky we are to have time. and like i said i hope someone learns something from me. I Hope my story has some sort of purpose or meaning. Even if it annoys everyone having to read another post about my stupid disease blah blah blah i hope even just one person thought of me briefly and decided to make that appointment to get that suspicious mole checked out or decided to do her self exams in the shower. I hope my life and death holds meaning to people. i hope i helped someone at all. I hope i can inspire someone. I don't know if any of this makes sense, its honestly all over the place, my neurological symptoms with the brain tumors are no fun at all so i apologize otherwise but thanks for reading anyways. Long story ......long. Enjoy the time you have, stop procrastinating and get out there and live because one day you will be me , hopefully with a lot less regrets, don't be scared or care so much what people think, advocate for yourself, don't let doctors walk all over you, enjoy the sunsets! Spend more time on the truly important things, that job doesn't care about you, take the vacation and all the paid days off, be a good friend and work on those relationships and build them because who is surrounding you when your dying is so so important, have a good group! Don't carry around any hate, its all baggage. Let your friends and loved ones talk openly about hard things. We are all going to die, and that's ok and its ok to talk about. I hope my life has had meaning in one of your lives, i've succeeded if so. :) I hope i have time for many more blog posts, If you have questions etc feel free to ask or suggest my next topic. Thank you for reading the ramblings of a crazy dying lady. I think i will post updates on here for as long as i can for anyone who is interested in following along with me on this crazy ride....... God bless all of you xoxoxoxox
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