tiedyedicorn

IMPORTANT HEALTH RELATED MESSAGE: Hi, everyone, as you know, I've been not around lately (when I used to be around and posted daily, etc.). Firstly, pardon me as my vision is now blurred, so it is hard to type posts. Recently, I've been in the hospital battling Chronic Myeloid Leukemia. I got told i have it last Tuesday. It'll be a week soon and my health is seemingly improving. That's not to say I'll be back any time soon, as I still need treatment here and time. I do understand if you part ways with me and my content. I will send out messaging to you when I'm back. In the meantime, I hope this explains a lot to you. I really didn't mean to keep you in the dark. I was in the dark for a long time not knowing why I felt as bad as I did. My white bl00d cell count was 560k (way too high) when I was first examined by the ER. Now, for the past few days, I've been in the cancer department bedroom, and my white bl00d cell count is at 60k. I also had pneumonia when I first came in (and didn't know that either), so yeah, it's been hectic! Thank you for reading this if you have, I may post more text post updates in the future

Published: June 18th 2024, 12:33:04 am

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IMPORTANT HEALTH RELATED MESSAGE: Hi, everyone, as you know, I've been not around lately (when I used to be around and posted daily, etc.). Firstly, pardon me as my vision is now blurred, so it is hard to type posts. Recently, I've been in the hospital battling Chronic Myeloid Leukemia. I got told i have it last Tuesday. It'll be a week soon and my health is seemingly improving. That's not to say I'll be back any time soon, as I still need treatment here and time. I do understand if you part ways with me and my content. I will send out messaging to you when I'm back. In the meantime, I hope this explains a lot to you. I really didn't mean to keep you in the dark. I was in the dark for a long time not knowing why I felt as bad as I did. My white bl00d cell count was 560k (way too high) when I was first examined by the ER. Now, for the past few days, I've been in the cancer department bedroom, and my white bl00d cell count is at 60k. I also had pneumonia when I first came in (and didn't know that either), so yeah, it's been hectic! Thank you for reading this if you have, I may post more text post updates in the future

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IMPORTANT HEALTH RELATED MESSAGE 3: I had my first outpatient appointment today to see if I need another bl00d transfusion and I did NOT! My red bl00d cells and platelets are at a great level currently! 😁 Next appt is tmrw to check my eyes to see if there's any improvement in the bl00d spots and swelling (yes, my vision is still impaired by my cancer...), but I was told since it didn't hit the optical nerve, it should recover over time. Thank you for your kind wishes and msgs, it's soothing and comforting to read so much support. This has been a scary time, yet I feel like I've grown as a person as well and am more mindful that health is so important

IMPORTANT HEALTH RELATED MESSAGE 3: I had my first outpatient appointment today to see if I need another bl00d transfusion and I did NOT! My red bl00d cells and platelets are at a great level currently! 😁 Next appt is tmrw to check my eyes to see if there's any improvement in the bl00d spots and swelling (yes, my vision is still impaired by my cancer...), but I was told since it didn't hit the optical nerve, it should recover over time. Thank you for your kind wishes and msgs, it's soothing and comforting to read so much support. This has been a scary time, yet I feel like I've grown as a person as well and am more mindful that health is so important

IMPORTANT HEALTH RELATED MESSAGE 2: I got to go home on 6/20/24 from the hospital! Of course, I have plenty of follow up appts and will have to battle chronic myeloid leukemia for the rest of my life. I'm definitely improving, though, since I'm not so swollen everywhere, my spleen isn't super enlarged, my white bl00d cell count isn't sky high, etc. I've been taking 1 ponatinib pill (those are EXPENSIVE. look it up. Thank goodness for medicaid...) and 5 ster01d pill every morning since leaving the hospital. Every night, i take 1 pepcid pill. No side effects. All day yday I got a lotta chores and paperwork and things done (SO much energy)! Today, I also feel ready to tackle the world. Thank you for your prayers and kind words

IMPORTANT HEALTH RELATED MESSAGE 2: I got to go home on 6/20/24 from the hospital! Of course, I have plenty of follow up appts and will have to battle chronic myeloid leukemia for the rest of my life. I'm definitely improving, though, since I'm not so swollen everywhere, my spleen isn't super enlarged, my white bl00d cell count isn't sky high, etc. I've been taking 1 ponatinib pill (those are EXPENSIVE. look it up. Thank goodness for medicaid...) and 5 ster01d pill every morning since leaving the hospital. Every night, i take 1 pepcid pill. No side effects. All day yday I got a lotta chores and paperwork and things done (SO much energy)! Today, I also feel ready to tackle the world. Thank you for your prayers and kind words

IMPORTANT HEALTH RELATED MESSAGE 5: Hi! It's been a while! I'm still alive! So much has happened (good and bad) since my last update (which was forever ago)! I'll keep it short and summarized as best I can! I'm currently around halfway-ish through my 2nd cycle of the IV drug (called blinatumomab), after having all of September as a break, due to bl00d counts being too low. My birthday also came and went (Oct 17th)! I'm in the 1st (of 4) stage of remission!!!! The plan is, to finish this cycle around Nov 1st, then it's a 2 week 'break' even though I have appointments literally every other day/ every day.... I have my 3rd spinal tap and 3rd bone marrow biopsy scheduled for that first week of Nov.. then, around Thanksgiving, if I don't need a 3rd cycle of the IV drug, it'll be 1 week of high dose chemo (with the last 2 days of 4 sessions of radiation; 2 per day), then bone marrow/ stem cell transplant time (where i'll be in hospital for anywhere between 2 weeks to 1 month, or 2 months if there's complications). I'll be cancer free here soon! I can't wait!

IMPORTANT HEALTH RELATED MESSAGE 5: Hi! It's been a while! I'm still alive! So much has happened (good and bad) since my last update (which was forever ago)! I'll keep it short and summarized as best I can! I'm currently around halfway-ish through my 2nd cycle of the IV drug (called blinatumomab), after having all of September as a break, due to bl00d counts being too low. My birthday also came and went (Oct 17th)! I'm in the 1st (of 4) stage of remission!!!! The plan is, to finish this cycle around Nov 1st, then it's a 2 week 'break' even though I have appointments literally every other day/ every day.... I have my 3rd spinal tap and 3rd bone marrow biopsy scheduled for that first week of Nov.. then, around Thanksgiving, if I don't need a 3rd cycle of the IV drug, it'll be 1 week of high dose chemo (with the last 2 days of 4 sessions of radiation; 2 per day), then bone marrow/ stem cell transplant time (where i'll be in hospital for anywhere between 2 weeks to 1 month, or 2 months if there's complications). I'll be cancer free here soon! I can't wait!

IMPORTANT HEALTH RELATED MESSAGE 4: Yday, i had my first outpatient cancer doc appt. They unloaded so much info on me it left me pretty scatter brained for a few hrs after and needed a bit to relax lol. At least I didn't have to do a bl00d transfusion since I didn't have to do 1 Sunday, but they still drew bl00d for updated labs, which is fine. There's just more that's happened too. Like, next steps. To sum it up; a port in my chest vein so they don't gotta prick me all the time/ so I can take IV any time (even at home, which will be needed in the future....), and the port takes like a week to heal under a dressing/ coat, then it can be free. And since the port is IN the chest vein, it'll be easy to shower with, etc. Don't need to be put to sleep to put it in. Just numbing cream on the site and maybe 'a little something to put you in a don't care type of twilight' lmfao, never done that, I think, so that'll be a new experience. The next thing is a spinal tap. So those 2 are gonna be future appts Then there's the big doozy..... there's a IV med my cancer doc says will help bind my T killer cells to only cancerous cells to bomb them. But leave the good, mature useful cells alone. Sounds great! But I will be inpatient for 9 to 12 days at the hospital AGAIN at some point in the future to make sure no side effects. (Remember i was inpatient for 9 days from 6/11 to 6/20. So pretty much that amount of time and a little something more days after). Then a Fannie pack of that IV med for home (can take off Fannie pack and the IV line will be just long enough for bath and shower and sleep). Idk if she said for 28 days then 14 day break then again for until they say no more, or what. But yeah. Lots to wrap my head around, but I don't really have a choice Im not sure when the future inpatient hospital stay will take place. Could be a month from now or months. My cancer doc has to get it approved by my medicaid. And the hospital stay will come well after those other 2 appts for the chest vein port and spinal tap (or mayb

IMPORTANT HEALTH RELATED MESSAGE 4: Yday, i had my first outpatient cancer doc appt. They unloaded so much info on me it left me pretty scatter brained for a few hrs after and needed a bit to relax lol. At least I didn't have to do a bl00d transfusion since I didn't have to do 1 Sunday, but they still drew bl00d for updated labs, which is fine. There's just more that's happened too. Like, next steps. To sum it up; a port in my chest vein so they don't gotta prick me all the time/ so I can take IV any time (even at home, which will be needed in the future....), and the port takes like a week to heal under a dressing/ coat, then it can be free. And since the port is IN the chest vein, it'll be easy to shower with, etc. Don't need to be put to sleep to put it in. Just numbing cream on the site and maybe 'a little something to put you in a don't care type of twilight' lmfao, never done that, I think, so that'll be a new experience. The next thing is a spinal tap. So those 2 are gonna be future appts Then there's the big doozy..... there's a IV med my cancer doc says will help bind my T killer cells to only cancerous cells to bomb them. But leave the good, mature useful cells alone. Sounds great! But I will be inpatient for 9 to 12 days at the hospital AGAIN at some point in the future to make sure no side effects. (Remember i was inpatient for 9 days from 6/11 to 6/20. So pretty much that amount of time and a little something more days after). Then a Fannie pack of that IV med for home (can take off Fannie pack and the IV line will be just long enough for bath and shower and sleep). Idk if she said for 28 days then 14 day break then again for until they say no more, or what. But yeah. Lots to wrap my head around, but I don't really have a choice Im not sure when the future inpatient hospital stay will take place. Could be a month from now or months. My cancer doc has to get it approved by my medicaid. And the hospital stay will come well after those other 2 appts for the chest vein port and spinal tap (or mayb