Ok so I have to tell you how HAPPY! I am to find your blog! I typed in APL in you tube and yours came up! I watched a few of your APL blogs and it made me laugh (because of the irony) because u said so much of what I have experienced... finally someone who completely understands what I am going through! I was diagnosed with APL on May 23rd... I have wanted to do something to get out my thoughts and my feelings of my experience and you have inspired me to start my own documentary! PS Ur RAD!
Ok so I have to tell you how HAPPY! I am to find your blog! I typed in APL in you tube and yours came up! I watched a few of your APL blogs and it made me laugh (because of the irony) because u said so much of what I have experienced... finally someone who completely understands what I am going through! I was diagnosed with APL on May 23rd... I have wanted to do something to get out my thoughts and my feelings of my experience and you have inspired me to start my own documentary! PS Ur RAD!
jodi picoult wrote my sisters keeper and chose for kate (the one with cancer) to have that type of cancer because her daughter actually had cancer and i would assume she had that type of cancer.
my heart is so happy for u, because i lost 2 people in the last year...i thank god each day for people who can make it through and just get better from it. this story is why i always make references to cancer and other ways we can just be aware of it (skin, lung, etc.) anyhoo, look at you now! great style and a good heart! thank u risa!
And I also want to say how happy I am you created this other channel in addition to your makeup channel. I'm not really subscribed to any people that "vlog" so to speak, but your topics you choose to discuss are very compelling, and you're story is inspiring =)
Sick? Or with leukemia? because the 2 are different. I began getting sick (with leukemia) in approximately the beginning of June 03 - admitted to the hospital July 25, diagnosed July 27th. My last round of chemo was Nov. 7th and was deemed "in remission" January 6th 04 though remained on suppressive oral chemo until Oct 04 and remained "sick" until about that point. Though the "sickness" went away slowly and continued slightly past Oct bc my immune system had to rebuild itself. Every virus
I came into contact with I contracted. My immune system was akin to a newborn's as my body had to relearn the various illness' to build up immunity. It wasn't truly until like 07 that I noticed myself not getting sick at least once every 2 months.
Wow.. thanks for clarifying =) I guess I didn't consider the fact that you're body had to start from scratch with building up again. I think we actually take for granted the times we got sick as kids not realizing that every time that happens we are building up a resistance. I hated to be nosy about this, but I think people naturally are curious about things that are sometimes extremely painful and horrific for others. It's really sad actually, I feel like a bad person!!
No dont be!! We as humans are curious which I believe is a beautiful thing. I'm completely open to talking about any and every aspect so never hesitate with me! :)
Oof, it really makes me mad -and very sad- when I hear about how badly the medical profession treats its patients. They're not a disease...they're people.
I really appreciate you sharing your story. I know a lot of people are weirded out or very private when doing things on YouTube, but you are always so real, and I just really think that's awesome! Thank you so much, Risa, for being who you are! :)
omg u talk about it so lightly ...I know it's in the past but listening to you made me shiver especially when you talked about when they took bone marrow from you. I know that's so painful because I've heard from family members.
It's not a light subject for me at all. This is my "strong" removing myself from the situation to tell about it face. 6 years later I'm still very traumatized by it.
I just had my 3 year anniversary..the day came and went and I didn't even realize it. I'm thankful to finally have the fear of it coming back start to subside. I think I would have been better off NOT knowing what would happen for the one biopsy I did have. The mere idea of it scared me. And when I combined that with the actual pain of the procedure i swore that i would never walk again. You can imgaine the anxiety I had with the 15 or so lumbar punctures I had when I reacted badly to the atra.
Ahh, you were on Atra too?! Yea that was my oral chemo for a little over a year. That sucker made me gain so much weight and the face sores...made me smell funny too. Yea, my initial biopsy-I was so sick and with DIC- that I have arthritis from now. So cold days are a tad painful for me. Congratulations! (btw) What kind of leukemia did you have that you only had to have 1 biopsy?!? Im shocked. I've had more than can I count - it was like an every 2 months deal, to make sure it hadn't come back
We had the same kind, APML. I'm fortunate to have pretty good medical coverage through my husband's employer, at least for the moment, so they pay a large portion for some test called a PCR I believe. They look at the DNA and I just get blood drawn. I'm very appreciative of that! I had the biopsy after my induction round of chemo. They wanted to make sure I was in molecular remission before my next round. Atra caused brain swelling for me that resulted in vision loss from not having blood flow.
The lumbar puntures and the prednisone(lovely) were to relieve the pressure. It didn't cause sores on my face but made all my skin dry and cracked. I had this painful red ring around my face where it came into contact with my darth vader mask lol. So I only took 6mp and methotrexate as maintenance. I had 5 rounds of chemo. I had 2 rounds of arsenic trioxide and it wreaked havoc(continues to) on my system but I'm glad I did that because I was only able to take the atra for my induction round.
Even with all the trauma, I'm starting to realize I made it through. And its not necessarily because cancer was meant to be a wake up call or that I should do more with my life and all that. I'm taking all that unnecessary stress off myself. I'm just going to put in my best effort to be me. Whatever that turns out to be I'll be happy. I bet you don't know, but I owe some of this new resolve I have to you :-) We had a convo on YT before but I imagine I don't even sound like the same person lol.
But through encouraging words from you and other positive people around me, I'm giving myself room to grow by trying to get rid of the negatives. And that's in general, not just all the cancer related stuff. Thanks again:-)
*smile* I'm happy to hear that! I myself still struggle with "the meaning' behind it all - and if anything for me it's meant to appreciate the little things, and exactly as you said - to be happy and embrace who you truly are - as life is so very short.
I completely forgot about the sensitivity of skin!! OMG band aids=no bueno When they first sent me home they had me on a Fentanyl patch and not only did it make me sick, it irritated and "tore" my skin. Ugh. And my initial central line was
infected and healing for quite some time, but as I said, adhesive based products tore and irritated my skin. So we had to wrap the wound instead with gauze and fabric going across my neck, down across my chest/back and under my arm.
Eek! @ methotrexate - that stuff scared me. It's yellow, I think? One of my roomie's had it and I remember them dispensing it in her spine. yuck yuck yuckkk!! Ugh. I felt so bad. I was on Idarubicen intially which my body couldn't handle as I was too sick for the 5
doses they had planned. My next 2 rounds were Daunorubicen instead. All the medicine was not pleasant, though I did oddly find comfort in my Neupogen shots, though they gave me bone pain and platelet infusions/blood transfusions were a god send. Did you "like" yours also? I felt like a vampire lol but I cant even describe to anyone what it felt like after those transfusions.
Haha yeah I said the same thing to my mom about me being a vampire one day after they gave me red blood cells. She said all my high school years spent watching Buffy the vampire slayer had a purpose lol. Although the 1st transfusion I had caused a horrible reaction. All my skin swelled up with yellow & green welt marks. Had to be pre-medicated before I got any blood products after that. I forgot about the methotrexate injections I had. They pump you full of so many drugs it's hard to remember.
It was no fun to say the least. It was so painful. Like blackout, sweat like a pig painful lol. I had a neupogen shot with that round of chemo though so at least that time I wasn't neutropenic.
I'm so thankful they used a picc line for me. I would have freaked out with a line in my neck. But we deal with it even if we think we can't. The 1st was in my left arm but that was damaged when I forgot my IV pump on a trip back from the bathroom lol.
So I had another installed on my right. You can still see the scar from that one. But I think it's small price to pay. That's pretty much the only visible mark from this whole ordeal I have. The weird thing about that is people see you and dont believe how sick you were/are. Even while I was still having rounds of chemo, if I covered my line people had no clue. But I tried, when I was able to anyway, to hide that I was so sick too. To this day I don't fully understand why.
omg with the misdiagnose syndrome. it happened twice in my life. once i was sent home from the ER diagnosed with a cold. it turned out i really had pneumonia... bad. and this year i almost lost my job because they misdiagnosed bronchitis over and over again until i had already missed almost three weeks of work. i heard about how you were fired for being sick, totally unfair. my job has me on probation for the above fiasco. why can't they understand that sometimes its beyond your control!?
my sis went through colon cancer and its good to hear your story, unfotunatley she passed,she never told us the ugly part of cancer so we wont feel bad, but basiically she went through all the same things that you did and with regards to steroid thing , i always thought that only the morfen made her act weird i didnt think it was also the steroids but yea thanks for ur story i feel like if my sister could tell her story she would be repeating everything u said..congrats..lisi
Thanks for sharing this! Im a hypochondriac, too. Ive been clinically dead twice, though, so maybe Im just afraid to come that close to death again? But at the same time, I feel like it was those near death occurrences that have brought me closer to my spirituality, so there is a kind of an upside to it. And dont ever think or say that u havent accomplished anything with your life. I know what you mean, but ur life and existence serves a very distinct purpose, even if u dont know what it is yet.
Thank you for sharing your story. Don't get down on yourself for feeling like you haven't accomplished a lot in the past since 6. Maybe this is part of your journey. You have made a difference by sharing your story and someone who may be going through the same thing may find comfort in your words.
I don't know that knowing exactly how a procedure will be done would help much. I went into a biopsy knowing exactly how they would do it, with what, where, blah blah blah, and it was still horrible, worst thing I've ever felt. In fact I went into it like "omg they're going to do this, and other people said it hurt really bad..." etc. I'm pretty sure it sucks no matter how prepared you may or may not be.
well the thing is, now that I thought about it, I've had more BMB's than i can count, and they got better with each one (though they still sucked) because I knew what was coming next and was prepared for what I was feeling. I think every NP or DR who does them should have to have one done to them so they know the pain. Hmpf! lol
I definitely agree with you on that one, like cops having to be shot with a taser.
I only had to have one biopsy done though (thank goodness), so that's all the experience I have with really awful sharp objects in the hands of doctors.
I am a Phlebotomist (aka I work in the lab..lol) and just as she says...insist on knowing what procedure youre having, WHY youre having it and what it consists of! It is your LEGAL right!
Girl, you already know you became very dear to me even though we're miles apart and we never officially spoken, but you inspire me and I'm happy that you are okay nowdays. It's so refreshing to see someone that is so honest with themselves. <3
its strange because your case was very close to the way my uncle found out he had leukemia too! he had huge black bruises from barely being touched and he would shave and he would bleed and it wouldnt stop, and when he started coughing blood he decided to get checked for whatever was ailing him. he looked kind of green/gray when i saw him at the hospital just before they told him what he had. congrats on 6 years!! his 5th year of recovery will be in november. its times like this where i'm---
This has been flagged as spam show
Ok so I have to tell you how HAPPY! I am to find your blog! I typed in APL in you tube and yours came up! I watched a few of your APL blogs and it made me laugh (because of the irony) because u said so much of what I have experienced... finally someone who completely understands what I am going through! I was diagnosed with APL on May 23rd... I have wanted to do something to get out my thoughts and my feelings of my experience and you have inspired me to start my own documentary! PS Ur RAD!
APLSURVIVOR 1 year ago
Ok so I have to tell you how HAPPY! I am to find your blog! I typed in APL in you tube and yours came up! I watched a few of your APL blogs and it made me laugh (because of the irony) because u said so much of what I have experienced... finally someone who completely understands what I am going through! I was diagnosed with APL on May 23rd... I have wanted to do something to get out my thoughts and my feelings of my experience and you have inspired me to start my own documentary! PS Ur RAD!
APLSURVIVOR 1 year ago
I live in the east bay now, I totally understand your need to move back east.
andavis50 2 years ago
I feel for you, i'm so glad your happy and healthy your a really strong lady to have gone through what you did.
poisonxbubbles 2 years ago
jodi picoult wrote my sisters keeper and chose for kate (the one with cancer) to have that type of cancer because her daughter actually had cancer and i would assume she had that type of cancer.
ParamoreIsSahweet 2 years ago
WOW! Your so brave! I'm so happy your alive. Congrats on your 6 year mark. You are a very strong person.
summerlabellarosa 2 years ago
my heart is so happy for u, because i lost 2 people in the last year...i thank god each day for people who can make it through and just get better from it. this story is why i always make references to cancer and other ways we can just be aware of it (skin, lung, etc.) anyhoo, look at you now! great style and a good heart! thank u risa!
(rip aaron and aunt glo)
SugarFreeTV 2 years ago
And I also want to say how happy I am you created this other channel in addition to your makeup channel. I'm not really subscribed to any people that "vlog" so to speak, but your topics you choose to discuss are very compelling, and you're story is inspiring =)
Zingozero 2 years ago
One more question, and if you have already answered I apologize, but, how long were you actually sick for? Like, weeks, months..??
Zingozero 2 years ago
Sick? Or with leukemia? because the 2 are different. I began getting sick (with leukemia) in approximately the beginning of June 03 - admitted to the hospital July 25, diagnosed July 27th. My last round of chemo was Nov. 7th and was deemed "in remission" January 6th 04 though remained on suppressive oral chemo until Oct 04 and remained "sick" until about that point. Though the "sickness" went away slowly and continued slightly past Oct bc my immune system had to rebuild itself. Every virus
HippyL0ngst0cking 2 years ago
I came into contact with I contracted. My immune system was akin to a newborn's as my body had to relearn the various illness' to build up immunity. It wasn't truly until like 07 that I noticed myself not getting sick at least once every 2 months.
HippyL0ngst0cking 2 years ago
Wow.. thanks for clarifying =) I guess I didn't consider the fact that you're body had to start from scratch with building up again. I think we actually take for granted the times we got sick as kids not realizing that every time that happens we are building up a resistance. I hated to be nosy about this, but I think people naturally are curious about things that are sometimes extremely painful and horrific for others. It's really sad actually, I feel like a bad person!!
Zingozero 2 years ago
No dont be!! We as humans are curious which I believe is a beautiful thing. I'm completely open to talking about any and every aspect so never hesitate with me! :)
HippyL0ngst0cking 2 years ago
Oof, it really makes me mad -and very sad- when I hear about how badly the medical profession treats its patients. They're not a disease...they're people.
Congratulations on your six year mark. C:
meiastar 2 years ago
I think you are very brave, to confront the memories and feeling so openly on youtube. I think it's very brave and strong!
I really appreciante it.
Thank you for that!
LinaFlyg 2 years ago
I really appreciate you sharing your story. I know a lot of people are weirded out or very private when doing things on YouTube, but you are always so real, and I just really think that's awesome! Thank you so much, Risa, for being who you are! :)
davidluv4 2 years ago
omg u talk about it so lightly ...I know it's in the past but listening to you made me shiver especially when you talked about when they took bone marrow from you. I know that's so painful because I've heard from family members.
ut0pia88 2 years ago
It's not a light subject for me at all. This is my "strong" removing myself from the situation to tell about it face. 6 years later I'm still very traumatized by it.
MakeupByRisa 2 years ago
I just had my 3 year anniversary..the day came and went and I didn't even realize it. I'm thankful to finally have the fear of it coming back start to subside. I think I would have been better off NOT knowing what would happen for the one biopsy I did have. The mere idea of it scared me. And when I combined that with the actual pain of the procedure i swore that i would never walk again. You can imgaine the anxiety I had with the 15 or so lumbar punctures I had when I reacted badly to the atra.
harmonee143 2 years ago
Ahh, you were on Atra too?! Yea that was my oral chemo for a little over a year. That sucker made me gain so much weight and the face sores...made me smell funny too. Yea, my initial biopsy-I was so sick and with DIC- that I have arthritis from now. So cold days are a tad painful for me. Congratulations! (btw) What kind of leukemia did you have that you only had to have 1 biopsy?!? Im shocked. I've had more than can I count - it was like an every 2 months deal, to make sure it hadn't come back
MakeupByRisa 2 years ago
We had the same kind, APML. I'm fortunate to have pretty good medical coverage through my husband's employer, at least for the moment, so they pay a large portion for some test called a PCR I believe. They look at the DNA and I just get blood drawn. I'm very appreciative of that! I had the biopsy after my induction round of chemo. They wanted to make sure I was in molecular remission before my next round. Atra caused brain swelling for me that resulted in vision loss from not having blood flow.
harmonee143 2 years ago
The lumbar puntures and the prednisone(lovely) were to relieve the pressure. It didn't cause sores on my face but made all my skin dry and cracked. I had this painful red ring around my face where it came into contact with my darth vader mask lol. So I only took 6mp and methotrexate as maintenance. I had 5 rounds of chemo. I had 2 rounds of arsenic trioxide and it wreaked havoc(continues to) on my system but I'm glad I did that because I was only able to take the atra for my induction round.
harmonee143 2 years ago
Even with all the trauma, I'm starting to realize I made it through. And its not necessarily because cancer was meant to be a wake up call or that I should do more with my life and all that. I'm taking all that unnecessary stress off myself. I'm just going to put in my best effort to be me. Whatever that turns out to be I'll be happy. I bet you don't know, but I owe some of this new resolve I have to you :-) We had a convo on YT before but I imagine I don't even sound like the same person lol.
harmonee143 2 years ago
But through encouraging words from you and other positive people around me, I'm giving myself room to grow by trying to get rid of the negatives. And that's in general, not just all the cancer related stuff. Thanks again:-)
harmonee143 2 years ago
*smile* I'm happy to hear that! I myself still struggle with "the meaning' behind it all - and if anything for me it's meant to appreciate the little things, and exactly as you said - to be happy and embrace who you truly are - as life is so very short.
I completely forgot about the sensitivity of skin!! OMG band aids=no bueno When they first sent me home they had me on a Fentanyl patch and not only did it make me sick, it irritated and "tore" my skin. Ugh. And my initial central line was
HippyL0ngst0cking 2 years ago
infected and healing for quite some time, but as I said, adhesive based products tore and irritated my skin. So we had to wrap the wound instead with gauze and fabric going across my neck, down across my chest/back and under my arm.
Eek! @ methotrexate - that stuff scared me. It's yellow, I think? One of my roomie's had it and I remember them dispensing it in her spine. yuck yuck yuckkk!! Ugh. I felt so bad. I was on Idarubicen intially which my body couldn't handle as I was too sick for the 5
HippyL0ngst0cking 2 years ago
doses they had planned. My next 2 rounds were Daunorubicen instead. All the medicine was not pleasant, though I did oddly find comfort in my Neupogen shots, though they gave me bone pain and platelet infusions/blood transfusions were a god send. Did you "like" yours also? I felt like a vampire lol but I cant even describe to anyone what it felt like after those transfusions.
HippyL0ngst0cking 2 years ago
Haha yeah I said the same thing to my mom about me being a vampire one day after they gave me red blood cells. She said all my high school years spent watching Buffy the vampire slayer had a purpose lol. Although the 1st transfusion I had caused a horrible reaction. All my skin swelled up with yellow & green welt marks. Had to be pre-medicated before I got any blood products after that. I forgot about the methotrexate injections I had. They pump you full of so many drugs it's hard to remember.
harmonee143 2 years ago
The last one I had caused my menengies to swell.
It was no fun to say the least. It was so painful. Like blackout, sweat like a pig painful lol. I had a neupogen shot with that round of chemo though so at least that time I wasn't neutropenic.
I'm so thankful they used a picc line for me. I would have freaked out with a line in my neck. But we deal with it even if we think we can't. The 1st was in my left arm but that was damaged when I forgot my IV pump on a trip back from the bathroom lol.
harmonee143 2 years ago
So I had another installed on my right. You can still see the scar from that one. But I think it's small price to pay. That's pretty much the only visible mark from this whole ordeal I have. The weird thing about that is people see you and dont believe how sick you were/are. Even while I was still having rounds of chemo, if I covered my line people had no clue. But I tried, when I was able to anyway, to hide that I was so sick too. To this day I don't fully understand why.
harmonee143 2 years ago
i thought she had APL in the movie
hmm
i obv didnt hear right
I still love the film, apparently it was true story about the girl having lukemia but i dont know about the sister suing im not sure
amazing video, very moving thankyou for sharing your story with us, :) x
XxXMeganRetardXxX 2 years ago
APML is APL. There's ALL, AML and APML (which some people call APL)
MakeupByRisa 2 years ago
omg with the misdiagnose syndrome. it happened twice in my life. once i was sent home from the ER diagnosed with a cold. it turned out i really had pneumonia... bad. and this year i almost lost my job because they misdiagnosed bronchitis over and over again until i had already missed almost three weeks of work. i heard about how you were fired for being sick, totally unfair. my job has me on probation for the above fiasco. why can't they understand that sometimes its beyond your control!?
falleninto 2 years ago
you're so brave (:
hiimalexx 2 years ago
wow, the "aids floor".. :(
KrisMTL 2 years ago
my sis went through colon cancer and its good to hear your story, unfotunatley she passed,she never told us the ugly part of cancer so we wont feel bad, but basiically she went through all the same things that you did and with regards to steroid thing , i always thought that only the morfen made her act weird i didnt think it was also the steroids but yea thanks for ur story i feel like if my sister could tell her story she would be repeating everything u said..congrats..lisi
santanal1 2 years ago 2
i havent seen the movie but the book "My Sister's Keeper" brought me to tears when I read it..
x0col0rm3pink0x 2 years ago
Thanks for sharing this! Im a hypochondriac, too. Ive been clinically dead twice, though, so maybe Im just afraid to come that close to death again? But at the same time, I feel like it was those near death occurrences that have brought me closer to my spirituality, so there is a kind of an upside to it. And dont ever think or say that u havent accomplished anything with your life. I know what you mean, but ur life and existence serves a very distinct purpose, even if u dont know what it is yet.
stlxprincess 2 years ago
Thank you for sharing your story. Don't get down on yourself for feeling like you haven't accomplished a lot in the past since 6. Maybe this is part of your journey. You have made a difference by sharing your story and someone who may be going through the same thing may find comfort in your words.
@missmarisol
Marisol79 2 years ago
Thanks for sharing with us Risa!
shootingstar770 2 years ago
I don't know that knowing exactly how a procedure will be done would help much. I went into a biopsy knowing exactly how they would do it, with what, where, blah blah blah, and it was still horrible, worst thing I've ever felt. In fact I went into it like "omg they're going to do this, and other people said it hurt really bad..." etc. I'm pretty sure it sucks no matter how prepared you may or may not be.
yoyocanary 2 years ago
well the thing is, now that I thought about it, I've had more BMB's than i can count, and they got better with each one (though they still sucked) because I knew what was coming next and was prepared for what I was feeling. I think every NP or DR who does them should have to have one done to them so they know the pain. Hmpf! lol
MakeupByRisa 2 years ago
I definitely agree with you on that one, like cops having to be shot with a taser.
I only had to have one biopsy done though (thank goodness), so that's all the experience I have with really awful sharp objects in the hands of doctors.
yoyocanary 2 years ago
I am a Phlebotomist (aka I work in the lab..lol) and just as she says...insist on knowing what procedure youre having, WHY youre having it and what it consists of! It is your LEGAL right!
ctsgirl78 2 years ago
great vlog...very informative. LOVE you Risa! You are an inspiration. I love your comment at 8:40m "I'm alive - so it's OK!"...lol
echokitten73 2 years ago
thank you for sharing your story :)
jennafizzy123 2 years ago
i love hearing your stories and just your opinions on things.
katiebrookeee 2 years ago
Thanks for sharing your experience with us. Youre such an inspiration <3
porcelainxdollface 2 years ago
Girl, you already know you became very dear to me even though we're miles apart and we never officially spoken, but you inspire me and I'm happy that you are okay nowdays. It's so refreshing to see someone that is so honest with themselves. <3
ChaoticShelly 2 years ago
thankful of the wonderful technology and advancements in medicine these days. thanks for sharing this experience with the world!!
-janee
MyNameIsJanee 2 years ago 2
its strange because your case was very close to the way my uncle found out he had leukemia too! he had huge black bruises from barely being touched and he would shave and he would bleed and it wouldnt stop, and when he started coughing blood he decided to get checked for whatever was ailing him. he looked kind of green/gray when i saw him at the hospital just before they told him what he had. congrats on 6 years!! his 5th year of recovery will be in november. its times like this where i'm---
MyNameIsJanee 2 years ago 2
Wow, Thanks for sharing that. It helped me put somethings that I have been going through in perspective!
JennyChoo82 2 years ago
i believe that the movie/book is based on real events so that may be why she had that type of cancer
you're such an inspiration and i really admire you
DollyMixMakeup 2 years ago