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