BMB COMES BACK CLEAN!!!

Yes, that's right! My bone marrow biopsy showed no signs of cancer!! I'm on to chemo in pill form now and after about a few years of that, I'm DONE!

Clark is still amazing as ever and I am loving every minute of it. People here hardly notice my extremely short hair because there are so many bald girls here anyway. By the way, my hair is growing back very nicely (thanks Crystal for the warning about parting it ASAP) and I can now go outside without a hat or a headscarf and be OK with it. My mom loves the look and people have told me I look like Twiggy, Audrey Hepburn (my favorite) and Drew Barrymore in the past month, and a lady in the cafeteria serving sandwiches complimented my "haircut" (I didn't have the heart to tell her it was unintentional).

-Marika

Still Surviving

Hello all!

I am still here at Clark and still loving it just as much.

To answer your question Aunt Terri, I'm not neutropenic anymore, so I don't have to watch out for raw foods, but I also am not about to hit McDonalds and ruin my health that way (oooh I hate fast food). So I am eating healthy foods, but I have no limitations on what I can eat, which is nice because there are really good sushi places around here.

Classes are going really well. My first paper was a success (I got a B, got referenced in class and the professor told me that if I make one or two minor corrections, I could turn it into an A, so I did and I have yet to get it back).

Unfortunately, my absentee ballot has not come in the mail yet. The good news is that I am very confident Obama will win NY, so I won't feel extremely guilty for not voting. I tried...

Anyway, I am off to dinner!

Much love,

Marika

Back at Clark!

I am writing from my desk at Clark University! At last I have returned to campus and cannot wait for things to start to come alive again after the Columbus day vacation. Everyone is welcoming me back, and I'm genuinely surprised that I managed to meet this many people and that this many people remember me. Anyway, I've gotta go catch up on some work here, but I'll try to keep posting. I still have a bone marrow biopsy in my near future to write about.

Much love,

Marika

Almost Out!!

Well, I am now only waiting for my neutrophils to come up. My white blood cells are high enough to get me out of here and the fever seems to be gone, so all I need is a few more neutrophils and I am outta here and back to Clark!!

-Marika

Last Time (For REAL.... I Hope)

Hello once again!

Sorry I haven't updated this in a while. I'm sure Laurie has kept all family members well informed, but just in case, and for everyone else, here's an update:

I am back in Strong Memorial for a few more days because of the neutropenic fevers caused by the last chemo. I got my port removed because the doctors thought it was infected. We don't know if they were right or wrong, but my fevers have gone down a LOT. In fact, I haven't had one in over 24 hours, which is GOOD GOOD GOOD. Last weekend I think I had a fever as high as 105.5 which, until then, I didn't know was possible.

My counts are slowly coming up and as soon as they're safe, I am outta here and back to Clark (yes Laurie, MA. YAY!!). Nothing else has been happening, I miss Clark U and I want to go back... That about sums it up. See you (family) at Hanukkah!

Much love,

Marika

Neutropenia Strikes Again

Hi again!

As you may have guessed by the title of this post, I am neutropenic again! No fresh foods (including peaches and sushi, my two favorite foods), no germy areas, no crowded places... Basically, I get to sleep, do homework and hang out at home all day long.

Anyway, there's not a whole lot to update people on. I got two units of red blood cells transfused today and platelets on Monday. Tomorrow I go in to get blood drawn for labs. This will happen every Monday and Thursday until my counts are back up.

One last thing: my hair is growing back!! You can see a little color now. It's still got a ways to go, but right now I'm past the peach fuzz and on to the baby's hair phase. This is exciting! I'm still wearing hats and headscarves (and setting a new fad at Clark U) but soon I will be sporting a pixie cut. Hopefully by December when I see all you family members I will have a decent head of hair. I don't think there are many pictures of me without hair (thank god), but if, and only IF I have enough hair by Hanukkah, I will allow the family paparazzi to shoot all they want.

Much love,

Marika

P.S. Grandma, the website did help. Thank you!!

Back to I-Town

Hi!

I'm back in Ithaca and about to lose my immune system for what I hope is the last time. Staying on top of school has been alright so far. The professors e-mail me work when they can and I have been reading the textbooks to keep up.

Other than that, there's not much going on here. We are going crazy trying to sanitize the house again and maybe this time I won't get sick.

-Marika

Last Consolidation!

Hello once again!

After spending ten amazing days at Clark U, I had to return to Rochester for my final round of consolidation chemo. I will return to Clark in about a month and I can't wait!! We are taking every precaution and more to keep me out of the hospital once my counts are down including complete house arrest (fun fun fun). Luckily I have a loving cat at one house and a playful dog at the other to keep me busy when friends (WHO HAVE ABSOLUTELY NO CONTAGIOUS HEALTH ISSUES) cannot make it over to visit, most likely because of school. I also have my own schoolwork to keep my mind working. My professors at Clark are aware of my condition and are e-mailing class notes and assignments to me while I'm away. Speaking of which, does anyone know anything about egyptian fractions?

Anyway, I am trying REALLY REALLY REALLY hard to stay healthy this time.

-Marika

Week One (Clark U)

So It's about one thirty in the morning and I'm writing yet again from my dorm room at Clark. Today (after I go to bed and wake up again), we will be going to Six Flags for our last day of orientation, which so far has been pretty awesome. Today a hypnotist came to campus and put on a hilarious show. If you ever need ideas for entertainment, seriously consider hiring one of these guys because this was impressive.

I will have my last round of chemo in Rochester because I wouldn't be able to go to class if I stayed here anyway. I will leave Clark sometime this week and return in October if there are no setbacks, but you all know me, so who knows how long I'll be away.

Anyway, I should get to sleep so I have energy for tomorrow's excursion.

Much love,

Marika!

CLARK

Hello once again!

Right now I am in my dorm room at Clark University. I have an awesome roomate and a few new friends and I am having an amazing time so far.

Tomorrow I'll find out when and where my last round of chemo is. Everything seems to be going well so far with me at college. The people here are very accepting of the bald, but I'm still going to try to start a headwrap fad (hehe).

Much love,

Marika

Last Few Days at Home

It looks like college will happen and I am more than ecstatic. We've been going crazy over here in a last minute dash to gather all the college necesseties, but with the help of a few friends, everything seems to be coming together.
I will get my drainage tube removed tomorrow (SUCH a relief. I will be able to wear fitted shirts and NOT look like I'm shoplifting again!). I haven't made any decisions on where I will be getting my last round of chemo and where I will be neutropenic. My mom and dad want two different outcomes (my dad wants everything in NY, while my mom wants me to stay in Worcester). If I cannot get passes to go to class while undergoing chemo, I would lean toward staying at home because the staff at Strong knows me and has worked with me many MANY times before, but if I can go to class, I guess Worcester would be a better plan. Either way, both of my parents have agreed to accept whichever I choose. This, however, does not mean that they won't try to influence my decision. Parents...*Sigh*
Much love,
Marika

The Questionable Surgeon

So surgery went relatively smoothly; they were able to do it laproscopically, but they did have to put another less icky drain in my side. It will come out in a few days though.
Although we were pleased with how the surgery went, Laurie, my mother and I were not as pleased with the actual surgeon. When we met with him to discuss the plan for the surgery and chemo afterward, we presented him with a plan that consisted of starting my final round of chemo a week after the surgery. He agreed to this. I have witnesses. He said that there would be no problem with this plan, so Laurie and my mother proceeded to make reservations at a hotel near Clark University for when I am neutropenic. These reservations are non-refundable.
After the surgery was completed, the surgeon denied having approved our plan and made it very clear that I would not be recieving chemo before I start college. As I told Laurie later, it seems that this surgeon has a very selective memory.
We may have to pull the "cancer card" to undo the hotel reservations, and I am considering filing a complaint. This will NOT spoil my chances of going to college, but it does complicate things a little and will make school harder, as I will have to either miss classes or take them in the hospital through my computer.
All that being said, I am quickly recovering from surgery (sleeping through most of the recovery because the vicodin they put me on knocks me out) and I should be back to normal, minus a gall bladder, quickly.
-Marika

Prom #2

Continuing on the other post from today...
I have been home for a little while and during this vacation from Strong Memorial, my parents and friends planned a make-up prom for me and my friends. It was INCREDIBLE! Many of my friends even said that this prom was better than the high school's prom!
Thank you everyone for showing up (about 75 people total, maybe more?) and making the prom a prom.
Thank you Jeff Clement for helping to hire my favorite band, IY, an amazing band from Ithaca with much potential. They all graduated from IHS, but that's not the only reason why they're popular. Their music had all generations dancing at the party (my mother included).
Thank you Celia Clement for helping put together some amazing food. Donated food came from some of my favorite restaurants and cafes in Ithaca (Viva Taqueria, Hope's Way and the Carriage House Cafe).
Thank you Silviana Russo and Paula Winner for helping with decorations (and Rachel Possen for helping me make signs to post over the food).
Thanks Mom and Dad and Patricia for organizing everything including renting the large pavillion at Stewart Park (where I normally work over the summer and a perfect spot for a party).
The prom was a GREAT success. I will try to post photos soon.

SO CLOSE!!

Hello!!
Some good and some semi-bad news. Semi-bad news first: Thursday is the surgery to have my gall bladder removed. It is scheduled to be a laproscopic surgery, so hopefully very few scars. There is about a 5% chance that they will have to go in the old fashioned way and leave a huge scar, but if that 5% pulls through, I'll count it as another battle wound.
The good news is that a week after the surgery, assuming all goes well, I have my FINAL round of consolidation chemotherapy!! This will last five days, and I should get out right in time to head off to college! This was our ultimate goal frm he start: to finish consolidation chemo before college. My family and I are EXTREMELY excited. We are now scrambling to buy all the college supplies.
Although I will be done with consolidation chemo, I will become neutropinic while I am at Clark, so while I have a weak immune system, I will be staying in a hotel with Aunt Laurie, close to the Clark campus. Also, in preparation for college, we found an oncologist in Worcester to check in with on a monthly basis at U Mass Medical.
After the neutropenic stage, I will restart the Atra chemo drug, which is a little scary because I was on this drug when I got two of the three seizures. The good part of this is that it is rare to have a bad reaction twice to the Atra. Most people who have reacted badly to this drug during the induction chemo have had much more success when they are reintroduced to it during maintinence therapy.
We are almost in the clear!!
Much love,
Marika

More Grrr....

Alright! Some not-so-great news here at Strong Memorial. I'm going under the knife and getting my gal bladder removed. The date is not yet set, but we're hoping that it's soon so that I can lose this tube in my side and the bag attached that I've been toting around for the past few days (VERY uncomfortable).
We are rescheduling the "Prom #2" party because of this setback. Hopefully, the party is the only thing that the surgery will affect (chemo, college...).
-Marika

Grrrr...

So about three days ago the doctors found inflamation in my gal bladder that was affecting my liver. They proceeded to immedeately put a tube in my side to drain fuid from my gal bladder and that tube remains there today. It's not permanent, but it's not comfortable either. My liver enzymes are going down, which is a good sign because it means there is less inflamation there, so I guess this annoying tube serves a purpose afterall.
Still no progress on growing neutrophils, which is what will send me home. Other than that, my counts seem to be improving.
-Marika

Still at Strong

Hello again!
I'm back at strong still and spiking fevers almost every day which is annoying, but once my counts come back up it should settle down.
there's not much to do here. my mom and i resorted to going outside and blowing bubbles.
julie visited today, which was fun. the nurses had to smuggle her and her mom in because they came after hours.
anyway, i'm going to try to keep this more up to date
much love,
marika

Back again...

Yesterday (7/21), I went in for a platelet transfusion, but before they gave me anything, they took my temperature. It was 101.2, which is too high for someone with low blood counts, so I am back as an inpatient at Strong Memorial for a few days until my counts come back up. This is mostly precautionary, so there's nothing to worry about, but there's no need to say I'd rather be at home.
Things are still on schedule for college, and we are remaining hopeful that everything works out for the Fall.
-Marika

Day 61 (Still home. Yay!)

Hola!
No news concerning cancer right now, which is a good thing.
Yesterday I got my roomate and room assignment for Clark U!! We went straight out and bought some comfy bedding and I've been facebooking my roomie lots.
The only medical news to report is that I got a shot today to stimulate my white blood cells to grow while my counts are dropping so that I don't turn neutropenic again. Hurt a little, but I figure I've had a lot worse in the past few months.
Anyway, my temperature is good, my port looks fine according to our friend (who is a certified nurse) and everything looks alright so far. I'm trying not to jinx it...
Hi to all the nurses on 63400, 81200 and the ICU!!
Much love,
Marika

Day 60

HOOOME TONIGHT!!!!
Yes, that is correct! At approximately 9:30 tonight, I will be getting into my mother's car and driving back to Ithaca, where I will sleep in my OWN bed and eat REAL food and see my friends... YES!
Although that's amazing news, today was pretty tiring. I got the port inserted (which hurt quite a bit but not nearly as much as I thought it would), and we decided to get another round of interthecal (sp?) chemotherapy over with while we're still here, so I was basically in and out of the operation rooms all day or in bed recovering from them.
My counts are expected to drop soon so anyone who wants to visit (trust me, I want you to visit), please do it soon and please make sure you're healthy. I have about a month before the next and hopefully the final round of chemo, and then, if all goes well, I will be off to college!
Things seem to be looking up, so thanks for all the support through the rough and smooth. I'll try to keep this updated while I'm at home if anything exciting happens.
Much, MUCH love,
Marika

Day 59

So we (family and co.) decided it would be better to get a port inserted through which certified nurses can inject the chemo drugs and blood transfusions and draw blood when needed rather than getting poked all the time, so I have another procedure tomorrow. I have no clue what time this one is, but because I will be sedated for it, I'm not only a little nervous, but I also can't eat or drink anything until it's over. Lovely, no? I'm filling up on leftovers from dinner out tonight. My roomate is also having a procedure tomorrow for which she cannot eat/drink in the morning, so we may have a "lack of breakfast (and possibly lunch) party" in our room.
If all goes well, I should be home on Tuesday!!
Wish me luck!
Much love,
Marika

Day 57?

To clarify: I AM currently getting the chemo treatment. They found some at a local hospital, had it sent over immediately and started me on it last night (thursday). However, there IS a national shortage and this is a huge concern. Many leukemia patients are not being treated. I am one of the lucky ones. There is only one drug that has any effect on leukemia, and it is in short supply in the US so many people are going without proper care right now.
As for an update from inside the hospital, the PICC team came yesterday and were able to get into my vein on the first try (which, if you ask either one of my parents, they will agree that it is difficult to do), but could not successfully move the tube up my vein and into place. They tried three times before concluding that my veins were not yet ready for another PICC line. The IV team came next. They refused to numb my arm before poking me. It was unpleasant, but luckily I have an understanding roomate who encouraged me to scream as loud as I wanted, which wasn't very loud because my voice hasn't fully returned from the tubes in my throat.
Other than that, nothing too exciting has happened here.
I'll continue to try and keep this blog up to date.
Much love,
Marika

One Confusing Day

This morning my mother and I were informed that there was no ara-C (the only chemo drug that affects leukemia) in the area due to the nation-wide shortage. We got all of our stuff together, packed up, had the IV needle removed from my hand, and had JUST signed the discharge papers when a doctor came storming into the room and told us not to leave. The pharmacy had found some of the chemo drug in Roswell hospital. After getting unpacked AGAIN, it dawned on me: I would have to get poked again to be hooked up to an IV. I am now waiting for the PICC team to come in and hopefully numb my arm before jabbing a needle into my vein. Having both leukemia and a phobia for needles isn't a good combination.

back for more

hello!
I'm back in Rochester for my first round of consolidation chemo... maybe. There is a nation-wide shortage of the chemo drugs that I need, and this has affected Strong. For the first time ever, they ran out of the drug, so if they don't find any from other local hospitals by tomorrow, I will be going home for another week until Strong gets their expected shipment of the treatment I need. They will not only reserve a bed for me on that same day, but also give us a gas card for having us drive back and forth so much.
As for now, I'm in a double room, which is a new experience... My roomate is an older woman named Sarah. I haven't had time to get to know her as I've been unpacking and she has had visitors since I arrived in the room.
-Marika

last day home

Hi everyone! Today is my last day in Ithaca. I'm leaving for Rochester again tomorrow afternoon (most likely) and will be there for 5-7 days. There's not much to update about here in Ithaca... I had a TON of fun seeing (almost) everyone at home and I'll be back soon!!
-Marika

Graduation Pics

Here are some graduation pictures (thank you rachel) of me as a redhead. Hopefully more to come.

home!!

hi again!!
i'm home at last!! i got to walk at graduation and everything (pictures hopefully up soon. if not, there's always facebook for those who have it). i'm doing well at home: checking temp and weight every morning, mid-day and night (i lost a lot of weight. lad to get new clothes... scary) and hopefully i can actually keep the health up this time. i leave on the 7th for strong again for six days of chemo and when i come back, the doctors tell me that i'll be drained so i want to see everyone while i'm in town THIS time (unless you're sick).
hope to see you all!!
much love,
marika

still safe!

hey again! it's marika
still out of the ICU (going for a record here)
i want to thank ronnie and brig for the hats. i got out of the shower and there was a package on my bed, which was amazing. i love packages. and mail. thanks guys! i wore the coke hat around the hospital today.
three procedures tomorrow: heart sonogram, spinal tap and a bone marrow biopsy, so they won't let me eat or drink from midnight until after the last procedure, which starts at 1pm tomorrow. not looking forward to that.
they scheduled my discharge for wednseday, so hopefully i'll be home for graduation!!
-marika

I lost count of days....

hey everyone!! marika here! trying to keep everyone updated as much as possible.
i'm out of the ICU (hopefully for good. would be nice) and on to a regular diet, walking, have only one tube (which is unattachec at the moment) and feeling fine. i want to go home!! the doctors are hinting at maybe me being home for graduation, which i would LOVE, but they don't like to make any final decisions until the last second here.
last night, prom night, marcus (boyfriend for those who don't know) came over in a tux and the nurses decorated a room for a mini prom. most fun i've had here so far. thank you everyone!!
i miss everyone and can't wait to come home to you all. thanks for the love + support.
-marika

Better still today

Marika is coming out of all the interventions doctors needed to use to help her recover from the pneumonia. Her breathing tube is out! She is breathing on her own, and only getting better as time goes by.

Marika is winning.

Things are heading in the right direction. Still in ICU, Marika is conscious, she wants to talk and write, but the tubes are more than a little frustrating! She is surfing the waves of your love and encouragement. ~Janet

"Things are good this morning." ~Dave Warden

Marika has had a big turnaround. All the vital statistics that matter in her current situation are improving: blood pressure, oxygen saturation and the condition of her lungs. Those at her bedside are relieved. She's coming back and you are helping! ~Janet

Day 36 - Still in ICU

Marika is now on full life support in critical condition. She can have no visitors. Her parents want you to know that your comments, the love you have sent and the myriad ways you have lent your support and solidarity have strengthened them. And that is good for Marika. As she recovers, I will update, but if her condition worsens, I am not sure that I will be able to post that. Your comments yesterday help her and help everyone who is concerned about Marika to feel connected. I know they helped me. Please keep them coming. ~Janet

Day 35 - Marika is in ICU

Today the news is bad. Marika has pneumonia in both lungs. She is in ICU at Strong Memorial , sedated and intubated again. She is fighting for her life.

Marika needs us all to send her our faith, our love and our hope. If you have the slightest sense inside that Marika is going to survive this, please do what it takes to make that sense grow strong and certain. ~Janet

Day 34 - Back to Rochester

Marika had a wonderful weekend seeing her friends. She loved your visits on Saturday and felt quite tired by Saturday evening, in a good way! She developed a fever Saturday night and the decision was made to check it out at Cayuga Medical Center. Now the fever is down, but she is in some pain, which causes concern. Doctors are sending her back to Strong Memorial in Rochester on Sunday afternoon, June 15, 2008. Consider this a minor setback. With leukemia, the doctors are careful to take every change and symptom seriously. ~Janet

Home: Celebrate!

Marika and her family welcome all her friends and supporters to drop by her house on Saturday, June 14th, between 1 pm and 4 pm to say hello and see for yourself that indeed she is kicking leukemia!

Marika comes home

Marika is coming home on Friday: It is official. Her family is hosting an open house for her this weekend. All are invited (who are not contagiously sick of course). Date and time to be announced. Whoopee!

day 27?

hey everyone!! it's actually me, marika this time. i'm back out of the ICU and SOOO ready to go home... the doctors say that if there are no more complications, i could be out of here on friday. i feel fine even though my voice is still hoarse but i miss everyone to DEATH and cannot wait to get back to ithaca.

sorry about not posting the last few days. was very sedated and i don't really remember much from it, but thank you janet for keeping everyone posted and updated. all the support has really helped.

as an update on the hair: cassie jenis discovered a new talent of hers as she helped me trim down and gave me an extremely cute haircut, unfortunately, it's obviously still coming out. i've got a few hats and wigs for when i decide to just shave it off or whatever and i should be back in ithaca and showing them off soon.

anyway, i'm back to eating solid foods :D so that's good news. i miss everyone/everything about home and hopefully i'll be seeing everyone soon. good luck with the final week of classes IHS!!

much love,

marika

Day 20-something - Coming out of the woods

Marika is out of intensive care and looking forward to visitors! Please comment here if and when you think you could come up to Rochester, and of course, keep the other comments coming, too. Your comments are visitors that can't be quarantined! ~Janet

Week 4 - Saturday

Doctors treating Marika have learned that her seizures were a result of some recent cerebral strokes. Her doctors have ruled out the possibility that her cancer had spread from the bloodstream, so that is good news. They found blood clotting in her pancreas and kidney which is causing her severe pain. She is still sedated to help her cope with these conditions. Her medical team and family is watching over her in intensive care.

It goes without saying: Keep the positive coming, keep the love coming, keep the faith. ~Janet

Week 4

Marika came back with her characteristic force last week: Yay! But she had two seizures in the past day or so. She is back in intensive care today. Stay connected! People will read her the comments you leave here and she will gain strength from them. ~Janet

Day 17 - a bit of a downturn

Marika and her doctors are working to resolve some new issues these past few days. She's not feeling as good as she was. Keep the love coming. She'll be talking to you again soon and is listening to you now. ~Janet

day 15

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

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

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

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

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

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

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...

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.