Transplant Time

It became clear to my family, my doctors and I tthat needed a transplant. had had just about run out of chemo drugs amd radiation has med never cured APML and this was our last resort.

The Saturday before the first transplant (sheduled for the 29gh) i need to sleep now and i will explain why later/ srry for the exptremely rief and incomplete update......

Roswell (Buffalo)

Today my family and I went to Buffalo for a sexond opinion and this dramatically changed the route that I will most likely take to stay in remission.

The new doctor suggested restarting the meds I was on last Winter. The only change he suggested was that I take the atra one week on and one week off. He also told us that a bone marrow transplant right now with my heart condition (cardio myopothy -sp?-) would almost certainly be fatal, so I guess that's officially out of the question for now. The doctor wants to get my bone marrow healthy enough to extract some, freeze it, and save it for if the leukemia comes back again so that I don't have to use the marrow of a stranger, thus avoiding graph vs host disease.

Before going home, my mom and I stopped off at the Anchor Bar and Grill for a delicious meal at the home of the original Buffalo Wing. It was pretty good and a great way to begin a long drive back to Ithaca, where we were greeted by an enthusiastic puppy.

Suki is doing very well and has completely adjusted to her new home. Although everything seems like a chew toy to her, we love the new baby of the family and are having a ton of fun!

While I've been home I've been keeping very busy with the new puppy. I also re-started guitar and have been doing physical therapy and working out with the local gym's manager. With all of this and with the holidays coming up, I'll hopefullly stay occupied for a long time.

Time for a walk!

Much love,

Marika

More Suki

These are some pictures of Suki when we first met her at six weeks old.

Meet Suki

This is Suki. Suki will be coming home with me in exactly one week (November sixth) thanks to Laurie, Grandma and my mom. She is the cutest Havanese puppy in the world and possibly the cutest puppy in geveral in the world. 

Sorry I haven't updated the blog in a while, but other than getting an awesome and enormous TV (thanks to all who contributed), nothing exciting has been going on.

I am still in remission. We found this out today. We will be getting a second and maybe a third opinion before we commit to a bone marrow transplant.

Much love,

Marika

Another Day at Strong

Yesterday night they started the arsenic treatment through IV. This morning they were planning on placing a picc line, but because my platelets are a little low, they need to transfuse some. Unfortunately, as a reaction to rat poison in my blood, I have a slight fever, so they may have to delay the transfusion.

Word travels very very fast. I think I might have told five people, maybe six, but the entirety of Ithaca knows about the cancer. Impressive.

Not much else is going on around here. Hospitals are boring. You know this by now if you have been keeping up with the blog long enough. This is why I would love visitors!! Call me (or anyone I know if you don't have my number) to arrange a visit, or just show up!

Much love,

Marika

Bad news...

So I woke up this morning with petechiae. Petechiae was one of my initial symptoms, so after consulting with doctor Laurie, I promptly went to get a blood test. The results showed a relapse. Needless to say I am not very pleased. I am in Strong Memorial right now and waiting to start treatment tomorrow morning. They are putting me on arsenic (yes, arsenic). On the bright side, I won't lose any hair. I'll keep everyone updated.

Much love,

Marika

Checking in Again

Hi all!! I recently remembered amidst preparation for finals (next week... eek!) and school that I haven't blogged in a while. Obviously this blog will turn into an ordinary blog, seeing as I hopefully will never have to deal with cancer again (although I am dealing with an ear infection at the moment... icky), so I will not be offended if anyone unsubscribes, in fact, I don't think I will know if you unsubscribe because the website has no way of telling me who is subscribed in the first place!

Anyway, I thought I'd post a picture of me and my new head of hair! Usually it's curly, but I straightened it. Also, there's one more with a special effect that I really liked... I couldn't resist. ;-)

I will be finishing up the semester soon. This week is the last week of classes, and I plan to head home on the first and celebrate my 19th birthday in Ithaca with some close friends and family. Summer is almost here, and I got my job of choice at Stewart Park Day Camp as a boating assistant, so I recently had to get my CPR certification updated. I also got my First Aid certification, and I still have my lifeguarding certification. I figured, with all of my medical problems from last summer, I might as well know what they are/how to handle them in case I or another person needs it.

To all you nurses at Strong: I REALLY hope I can visit you all this summer!! I might just surprise you all and stop by some weekend. :-) Bet you won't recognize me with my hair this way!!

To my Ithacans: I miss you all and hope to see you over the summer. Let me know if you'll be in town. I'm trying to make up for a missed summer last year, so you'll most likely find me at Second Dam (I'll be the one covered in sunscreen) or on the commons enjoying the sun as much as I can (and as much as my parents will allow) when I'm not at work, that is.

To my family: I will be SO busy this summer because Caley asked me to help plan hers and Greg's wedding! Don't worry, I'll do a good job. Ooooh! I love parties!! I'm very excited. :-D

Much love,

Marika

Still at Clark

Hello once again!

I am currently enrolled in my second semester at Clark University and everything is going well so far. I am on the atra pill again, but this time, aside from an annoying headache (easily stopped with some tylenol), I am tolerating it very well. Today is my last day on the atra until March, at which point I will take eight pills every day for fifteen days. My pill schedule is confusing and annoying and I'm sure you don't want to hear about it (fortunately, contrary to the belief of my parents, I have it COMPLETELY under control).

So far my classes are going well. I have a lot of work now that I have a full course load, but I think I'm managing it well so far. I am getting good at balancing my social life with school work. :-)

Anyway, as most of the followers of this blog know, I'm posting a lot less frequently now. THIS IS A GOOD THING. THIS MEANS THAT NOTHING BAD IS HAPPENING.

Lunch time!

-Marika

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