hey guys~ marika here (for real). sorry if i hve a ton of typos... my vision is really bad right now and i'm typing blind for the most part.
i started losng my hair today... it really sucks. i was in the shower and i looked down and there was just HAIR. it was pretty scary. i like my hair a lot.
other than that, the side effects of the chemo are pretty mild with the exception of the sore throat. i haven't been able to speak for days, coughing, laughing, swallowing, anything hurts. it sucks majorly.
back to my vision... two doctors seem to have conflicting beliefs on whether or not it is a permanent change. if it is permanent, i might get surgery or something, but the doctor suggested we wait until after chemo is done as it would be very prone to infection and i have no white blood cells at the moment.
there are some pretty cool things about this hospital. the other day, i was not only visited by a harpist (soothes headaches supposedly), but also a doggie and a masseuse who massaged my back for like 20 minutes (my first real massage :D).
the doctors are about to come in, so i've gotta go but i'll try to post more.
i've got another bone marrow biopsy on monday >( which i'm NOT looking forward to. they said they'd sedate me more this time. i wouldn't mind just being completely passed out, persosnally.
-much love,
Marika
Friday, May 30, 2008
Wednesday, May 28, 2008
Day 13 - "it's gettin' better all the ti-i-me..."
Marika finished her chemo and has begun the target treatment, ATRA, again. This is a type of Vitamin A that has a really good success rate with her type of cancer. She is tolerating it now and her body is responding to it really really well! Her throat is SORE and thus Marika should not try to talk. Her vision is still blurry too, so reading and laptopping will wait a few days.
Thus the downside at this point is serious discomfort, and the upside is that Marika is getting better every day. Everything is really positive. More great news is that Marika can have visitors now. If you want to come, it would be good to check in with Tori J. so Marika has only a few people at a time. Remember that she is still highly susceptible to infection. Nobody with any trace of oncoming or outgoing sickness is allowed. You have to wash up when you are about to go in her room and wear face masks when you are there. Marika texted just now to tell you all "that i miss everyone and i'll try to write soon too." ~From Marika's Dad, David
Thus the downside at this point is serious discomfort, and the upside is that Marika is getting better every day. Everything is really positive. More great news is that Marika can have visitors now. If you want to come, it would be good to check in with Tori J. so Marika has only a few people at a time. Remember that she is still highly susceptible to infection. Nobody with any trace of oncoming or outgoing sickness is allowed. You have to wash up when you are about to go in her room and wear face masks when you are there. Marika texted just now to tell you all "that i miss everyone and i'll try to write soon too." ~From Marika's Dad, David
Sunday, May 25, 2008
Day 10 - Good news
Here's the news I got from Silviana this morning, who with her mom, Paula, is spending the weekend in Rochester. Marika's health improved so much Saturday that her breathing tube was removed Sunday morning - Whew!
To provide some perspective, Marika has had three physical challenges to deal with between her last post and today: her disease, Acute promyelocytic leukemia (APL); the chemotherapy treatments, of which she has sampled a few; and the sedation she needed in order to recover her lung capacity, which had become compromised during her hospital stay. Intrepid warrior that she is, Marika is gaining steadily on all three fronts.
Marika's other good signs are a decrease in her white blood cell count, healthy appetite for food, asking for her friends, and showing good stamina for the aggressive treatment she needs to recover.
All in all, things are looking up, yet the road ahead is still long. You can expect any minute she will be back blogging with you directly. ~Janet
To provide some perspective, Marika has had three physical challenges to deal with between her last post and today: her disease, Acute promyelocytic leukemia (APL); the chemotherapy treatments, of which she has sampled a few; and the sedation she needed in order to recover her lung capacity, which had become compromised during her hospital stay. Intrepid warrior that she is, Marika is gaining steadily on all three fronts.
Marika's other good signs are a decrease in her white blood cell count, healthy appetite for food, asking for her friends, and showing good stamina for the aggressive treatment she needs to recover.
All in all, things are looking up, yet the road ahead is still long. You can expect any minute she will be back blogging with you directly. ~Janet
Friday, May 23, 2008
Why isn't Marika posting?
After posting on Day 6, Marika continued to have difficulty breathing. Later that day, her doctors transferred her to intensive care to be on the safe side, and put her on a ventilator, helping her to breathe with the assistance of an air tube. She was sedated, because it's really hard to stay quiet with a breathing tube going down your throat! She continues to receive chemotherapy and is improving continually. The doctors have lightened the sedation and are still watching her closely in the Intensive Care Unit. Please keep posting because her family is reading aloud to Marika, she will know that you wrote to her, and she will only get stronger and feel better knowing that you care so much. ~Janet
Tuesday, May 20, 2008
day 6
i woke up this morning with difficlty breathing. the nurse gave me an inhaler like tube and some pills to open my lungs and my chest area. i didn't get much sleep that night. later, after falling asleep around 5am, i woke up with blurry vision in my right eye. it's not like i'm blind, but if i close my left eye, there is a gray blob in the center of my vision. the doctors assume it's because of the high white blood cell count (now down to 120,000) or the massive amounts of fluids that have been entering my body through the IV.
they started intense chemo literally minutes ago. the nurse said that because my white blood cells weren't working already, it won't change much over the next week or so. the part i'm worried about most is having a WBC count of 0, which according to the nurse, is virtually already happening.
the nurse also said that the chemo might affect how i like certain foods. i guess this means i'll be ordering out a lot because i already dislike hospital food. i miss peaches and sushi and smoothies... it's fresh fruit season and i can't have anything good. all my food has to be cooked, canned or frozen before consumption. also, i can't have any visitors who are contageously sick or any flowers in this room because they carry bacteria. this sucks a little, but it'll be over soon enough.
stay in touch!
-marika
they started intense chemo literally minutes ago. the nurse said that because my white blood cells weren't working already, it won't change much over the next week or so. the part i'm worried about most is having a WBC count of 0, which according to the nurse, is virtually already happening.
the nurse also said that the chemo might affect how i like certain foods. i guess this means i'll be ordering out a lot because i already dislike hospital food. i miss peaches and sushi and smoothies... it's fresh fruit season and i can't have anything good. all my food has to be cooked, canned or frozen before consumption. also, i can't have any visitors who are contageously sick or any flowers in this room because they carry bacteria. this sucks a little, but it'll be over soon enough.
stay in touch!
-marika
Monday, May 19, 2008
day 5 (cont.)
first of all i'd like to thank EVERYONE for all your help. i was truly amazed by the ammount of support people have been giving me and my family, and it's only day 5. IHS people, cornell folks, waza gals, dream team members, scatico friends, SPDC goers, ex and present montessorians, etc... i had forgotten how many close friends i've made. so yeah, thanks.
anyway, because i posted early in the day, i figured i'd keep people updated. intense chemo starts tomorrow definately. my white blood cell count keeps fluccuating (i'm currently at about 103,000) and the doctors are closely monitoring my vitals and my blood for any spikes in WBCs (white blood cells).
i was informed today that the chances of attending clark u in the fall as i had intended are very unlikely at this point. i'll spend 3-6 weeks here in the hospital (most likely 4) and come home for two weeks. after the first few weeks in the hospital, the worst will be over, but i will have to come back for more chemo, this time much less intense.
as for today, it was pretty uneventful. i couldn't move around much because they have drawn so much blood from me in the past few days. after a shower in the morning, i became lightheaded and spent the rest of the day in bed. my picc IV bled out and had to be bandaged again... twice. i'm still having trouble with clotting. on the bright side, i now only have one IV sticking out of my body, which is a nice change.
the bruises on my left arm are now ridiculous. one bruise covers most of my forearm, and the worst bruise i can't even see. it's right behind my left knee and has caused my knee to swell up so that it's difficult to bend and move around. in a few days i expect it to grow and merge with another nearby bruise near my left knee. it sounds weird to say, but the bruises are actually kind of pretty. ha, i probably sound crazy saying that, but you'd never know that skin could turn pink, purple, blue, green, and yellow all within the area of a few inches. no, i haven't completely lost my mind... i don't think.
thanks again for all of the support and i'll try to keep everyone posted as much as i can. if i don't post as frequently anymore, blame the chemo.
much love,
marika
anyway, because i posted early in the day, i figured i'd keep people updated. intense chemo starts tomorrow definately. my white blood cell count keeps fluccuating (i'm currently at about 103,000) and the doctors are closely monitoring my vitals and my blood for any spikes in WBCs (white blood cells).
i was informed today that the chances of attending clark u in the fall as i had intended are very unlikely at this point. i'll spend 3-6 weeks here in the hospital (most likely 4) and come home for two weeks. after the first few weeks in the hospital, the worst will be over, but i will have to come back for more chemo, this time much less intense.
as for today, it was pretty uneventful. i couldn't move around much because they have drawn so much blood from me in the past few days. after a shower in the morning, i became lightheaded and spent the rest of the day in bed. my picc IV bled out and had to be bandaged again... twice. i'm still having trouble with clotting. on the bright side, i now only have one IV sticking out of my body, which is a nice change.
the bruises on my left arm are now ridiculous. one bruise covers most of my forearm, and the worst bruise i can't even see. it's right behind my left knee and has caused my knee to swell up so that it's difficult to bend and move around. in a few days i expect it to grow and merge with another nearby bruise near my left knee. it sounds weird to say, but the bruises are actually kind of pretty. ha, i probably sound crazy saying that, but you'd never know that skin could turn pink, purple, blue, green, and yellow all within the area of a few inches. no, i haven't completely lost my mind... i don't think.
thanks again for all of the support and i'll try to keep everyone posted as much as i can. if i don't post as frequently anymore, blame the chemo.
much love,
marika
day 5
monday, 5/19/08
after i posted yesterday, a few things happened:
my mom and i took a walk through the hospital. it was pretty awkward. i had to wear a mask to prevent picking up airborne bacteria, and i had to tote around my IV as well. let's just say, people noticed. when i went into an elevator, people covered their mouths because they assumed i was contageous due to the mask i was wearing. we had to explain a few to a few people that i was wearing a mask for MY saftey, not theirs. furthermore, outside of the elevator i noticed many people staring at me. i guess it's not everyday that you see a girl with a mask, jammies, a bathrobe and an IV walking through the halls, but it was still a little weird to have people stare at you as you pass by.
later that night, they started me on a light chemotherapy treatment called atra last night as well as a steroid in hopes of reducing the side effects (specifically a spike in my white blood cell count). today, my white blood cell count is down from 130,000 to 90,000 and my fever is going down as well, which means the atra is working and the steroids are doing their jobs as well.
as of this morning, my picc IV, however, is bleeding a lot. this is mostly because i have a harder time forming clots.
as for gradutation, my family has arranged with my guidance counselors for potential wheelchair seating, because we don't know what kind of condition i'll be in on june 26th. prom... i'm still deciding whether or not to go. i've got a date, a dress and will have tickets, but i won't have hair. ick...
after i posted yesterday, a few things happened:
my mom and i took a walk through the hospital. it was pretty awkward. i had to wear a mask to prevent picking up airborne bacteria, and i had to tote around my IV as well. let's just say, people noticed. when i went into an elevator, people covered their mouths because they assumed i was contageous due to the mask i was wearing. we had to explain a few to a few people that i was wearing a mask for MY saftey, not theirs. furthermore, outside of the elevator i noticed many people staring at me. i guess it's not everyday that you see a girl with a mask, jammies, a bathrobe and an IV walking through the halls, but it was still a little weird to have people stare at you as you pass by.
later that night, they started me on a light chemotherapy treatment called atra last night as well as a steroid in hopes of reducing the side effects (specifically a spike in my white blood cell count). today, my white blood cell count is down from 130,000 to 90,000 and my fever is going down as well, which means the atra is working and the steroids are doing their jobs as well.
as of this morning, my picc IV, however, is bleeding a lot. this is mostly because i have a harder time forming clots.
as for gradutation, my family has arranged with my guidance counselors for potential wheelchair seating, because we don't know what kind of condition i'll be in on june 26th. prom... i'm still deciding whether or not to go. i've got a date, a dress and will have tickets, but i won't have hair. ick...
Sunday, May 18, 2008
days 1-4
hey all! so i guess i'm going to try this blog thing for anyone who's interested in the happenings at strong memorial hospital in rochester room 63428.
as most people at IHS know, i was diagnosed with leukemia on thursday, may 15th. i had been bruising really easily for about a week and getting light headaches (which had never happened before, much less 4-5 times in one week), and my feet were swelling up. i called my aunt, laurie, who is a doctor in MA and asked her about these symptoms. she promptly ordered blood tests at cayuga medical and the results showed an extremely high white blood cell count and a very low platelet count (causing bruising). the next morning, i saw my physician and was admitted as a patient at cayuga medical. while i was there, they must have poked me with needles a trillion times, not to mention conducted a bone marrow biopsy (the most painful ten minutes of my life. this procedure involves drilling into my bone and pumping out a sample of bone marrow. even on morphine and numbing meds on both the skin and the surface of the bone, it was excruciating. i don't think i have ever screamed so loud in my life), and ran multiple tests through the night. they checked in every few hours overnight to check my vitals, so i didn't get much sleep.
that day, i was visited by a few friends: silvie and her mother, paula, cassie and (the next morning) her mother, tory, marcus, rachel (my wifeyyy), jane, maddy, janet (who set me up with this blog, so thank you janet), and my parents (sorry if i forgot someone).
the next morning, i was driven by ambulance to strong memorial hospital. let me tell you, ambulance rides are NOT all that they're hyped up to be. you're basically in a flimsy little box that is bumping back and forth along the road, going way over the speed limit, and oh, you're facing backwards. i got nauseous.
once i got to the hospital, i was taken in a stretcher to my room (unit 634, room 28). i've got the second best view in the unit according to ruben, one of the nurses, and unlike my room at cayuga medical, my visitors don't have to wear masks here. i still can't have flowers, fresh fruit or veggies though.
i've learned that in a hospital, when they say that they don't need to poke you with needles again, to always assume it's false. eventhough they gave me a picc IV, which supposedly allows them to draw blood AND insert medicine into my bloodstream, they still poke me...
another thing they've tried are these things that they wrap around my legs. they inflate and massage my calfs to increase circulation and prevent blood clots. they're nice, but loud too, so i can't sleep with them on like the nurses want me to.
yesterday, saturday, 5/17, i was officially diagnosed with APML (acute promyleocitic leukemia). the doctor says that most people with this kind of leukemia have low white blood cell count, but it's not unusual for people to have high counts, like me. although this type of leukemia is extremely fast spreading, it's very treatable with appropriate chemotherapy. there's a 70% recovery rate. the remaining 30% also includes people with relapses. i guess this means i've got a good shot. the doctor thinks that because i'm young and otherwise healthy, my chances of complete recovery are significantly raised.
i'll be here for 4-6 weeks and back in time for graduation and prom. yes i'm graduating and will most likely attend clark university in the fall. unfortunately, i will not be able to play on the varsity soccer team because of the leukemia. all my teachers told me to not worry about work (with the exception of my lit portfolio, which i had already pretty much finished before this whole thing started) and i should be able to walk at graduation. prom.... well... i won't have much hair left at prom, so the question of whether or not i'll go is still up in the air.
thank you all for the support you've given me and hopefully i'll be back in action before too long.
as most people at IHS know, i was diagnosed with leukemia on thursday, may 15th. i had been bruising really easily for about a week and getting light headaches (which had never happened before, much less 4-5 times in one week), and my feet were swelling up. i called my aunt, laurie, who is a doctor in MA and asked her about these symptoms. she promptly ordered blood tests at cayuga medical and the results showed an extremely high white blood cell count and a very low platelet count (causing bruising). the next morning, i saw my physician and was admitted as a patient at cayuga medical. while i was there, they must have poked me with needles a trillion times, not to mention conducted a bone marrow biopsy (the most painful ten minutes of my life. this procedure involves drilling into my bone and pumping out a sample of bone marrow. even on morphine and numbing meds on both the skin and the surface of the bone, it was excruciating. i don't think i have ever screamed so loud in my life), and ran multiple tests through the night. they checked in every few hours overnight to check my vitals, so i didn't get much sleep.
that day, i was visited by a few friends: silvie and her mother, paula, cassie and (the next morning) her mother, tory, marcus, rachel (my wifeyyy), jane, maddy, janet (who set me up with this blog, so thank you janet), and my parents (sorry if i forgot someone).
the next morning, i was driven by ambulance to strong memorial hospital. let me tell you, ambulance rides are NOT all that they're hyped up to be. you're basically in a flimsy little box that is bumping back and forth along the road, going way over the speed limit, and oh, you're facing backwards. i got nauseous.
once i got to the hospital, i was taken in a stretcher to my room (unit 634, room 28). i've got the second best view in the unit according to ruben, one of the nurses, and unlike my room at cayuga medical, my visitors don't have to wear masks here. i still can't have flowers, fresh fruit or veggies though.
i've learned that in a hospital, when they say that they don't need to poke you with needles again, to always assume it's false. eventhough they gave me a picc IV, which supposedly allows them to draw blood AND insert medicine into my bloodstream, they still poke me...
another thing they've tried are these things that they wrap around my legs. they inflate and massage my calfs to increase circulation and prevent blood clots. they're nice, but loud too, so i can't sleep with them on like the nurses want me to.
yesterday, saturday, 5/17, i was officially diagnosed with APML (acute promyleocitic leukemia). the doctor says that most people with this kind of leukemia have low white blood cell count, but it's not unusual for people to have high counts, like me. although this type of leukemia is extremely fast spreading, it's very treatable with appropriate chemotherapy. there's a 70% recovery rate. the remaining 30% also includes people with relapses. i guess this means i've got a good shot. the doctor thinks that because i'm young and otherwise healthy, my chances of complete recovery are significantly raised.
i'll be here for 4-6 weeks and back in time for graduation and prom. yes i'm graduating and will most likely attend clark university in the fall. unfortunately, i will not be able to play on the varsity soccer team because of the leukemia. all my teachers told me to not worry about work (with the exception of my lit portfolio, which i had already pretty much finished before this whole thing started) and i should be able to walk at graduation. prom.... well... i won't have much hair left at prom, so the question of whether or not i'll go is still up in the air.
thank you all for the support you've given me and hopefully i'll be back in action before too long.
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