Monday, January 28, 2013

This One's a Fighter

Today was the big day: the official START of the transplant process.

Yes, it was just my first day of radiation. I have 3 more days of radiation, then I'll be admitted to the hospital to receive my 2 days of strong chemotherapy inpatient, and have one day to rest. second birthday.

Yes, one week from today, Monday, February 4th, 2013, I'm going to receive my sister's stem cells, which will implant in my bone marrow that was wiped clean of cancer cells by the radiation and chemo. In just one week, I will officially be able to say that I have no more cancer in my body.


As positive as that is, I am still going to be fighting for my life after my transplant, every single day. See, I'm moving to the official "bone marrow transplant floor" rather than being on the pediatric floor like I was before. Instead of spending days lying in bed and only walking twice during the day, I'm required to be out of bed at least 10 hours of each day. I also have to do a whole hour of exercise every day; walking on a treadmill or through the halls, pedaling on a stationary bike...whatever gets me out of bed and moving. Now, that probably seems like NOTHING. There is a comfy chair in my room I can cuddle up in (as long as my body stays upright), so technically I could take naps in it or watch TV. However, when you're sick, tired, weak, and nauseous from chemotherapy and radiation treatments, I know first-hand that all you want to do is lay in bed all day. Most days right after my previous chemo treatments, getting out of bed even just to go pee was the hardest thing in the world and took all my strength. However, back then I could simply crawl back into bed and curl up again. Not on the transplant floor. The reason for having to be out of bed so much is completely valid and for my own good: fluid can build up in the bottom of my lungs if I'm laying down too often, and if bacteria enters that fluid it can give me pneumonia. Tons of studies have shown that patients are much, MUCH more likely to develop pneumonia if all they do is lay in bed.

Why is this at all relevant to anything?

First of all, I wanted to give my supporters a heads' up about what's going on with me now! Second, I want to illustrate that the time after transplant is going to have to be my time to fight...and I need prayers and support as I've had through my chemo treatments to get through this. While I am definitely still a tough cookie and I have no doubt that I have the strength to get through the next few months, the fact is that it's not going to be an easy road. I'm going to have to push myself beyond my limits. Think about the last time you were really, really sick. What did you do? Take off work? Stay home from school? And what did you do in your free time? Most likely, you lay down in your cozy bed and slept or watched TV. When the human body feels sick, what it wants most is rest. But, in my case, I have to be up and exercising even when I feel sick as a dog. It's not what my body is used to doing, so I have to mentally push past my body telling me over and over to get into bed and instead obey my doctor's orders. Another example of my situation: when you get a bad stomach ache or feel nauseous, what do you do? Avoid food? Lay down? Maybe you even have to throw up sometimes to make your stomach feel better. However, since the radiation and chemo causes me to be nauseous most of the time, I have to make myself eat, exercise, and do my best to maintain my weight.

I'll be totally honest with all of you reading this: I DON'T want to have to go through this transplant. I don't want to have to lose my hair a second time just as I was getting my eyelashes back. I don't want to lose what I've built up since being so weak after my last chemo. I don't want to have to deny my body from laying in bed all day, and I certainly don't want to walk on a stupid treadmill when I feel like absolute crap.


I am a FIGHTER, and I've fought so hard already to get to this point. I remember when I first got sick, my cousin played this song for me a lot, and I think it's gotta be my "theme song" for this whole journey: The Figher, by Gym Class Heroes. Here's a link if you haven't heard it! (Warning: there are two words in the song that some may find inappropriate, so if you're showing this to younger kids or something check out the lyrics first OR find a clean version on youtube! :))

"Give me scars,
Give me pain,
Then they'll say to me...
There goes the fighter
Here comes a fighter
Then they'll say to me...
This one's a fighter."

I was thinking about the lyrics to this song as I was making a mix CD to use during my radiation sessions. All I could think is how this song has summed up this entire journey and continues to have great meaning. I'll have two big scars on my chest from the "ports" they use to give medications and draw blood 24/7...I've been through more pain than I would have ever expected I'd have to go through in my life...but, the fact is, when all of this is over and I'm healthy and well, I'm going to be able to get through ANY obstacle in my path in the future. See, while right now I'm much weaker than I used to be physically, in all other aspects I am many, many times STRONGER. Having made it through all the twists and turns that come with such a horrible diagnosis, I've learned things I don't think I'd ever learn otherwise, and one of those lessons has been about being willing to fight for myself. When I have to be on that bone marrow transplant floor, and I have to get up every day and exercise instead of staying in bed, every day that I get out of bed and make my feet hit the floor will be a little victory. A little victory against the brick wall in front of me that's crumbling down more and more: Cancer. And very soon, I'll be able to say that that brick wall is torn down, gone, just a memory. Yes, soon...I'll be a SURVIVOR.

Everyone faces obstacles. Unfortunately, I had to have cancer standing in front of me...but what's your brick wall? If there's anything good that comes from this measly blog post, I hope it's that the people who have heard my story know that it's the story of a fighter; a fighter who never gave up. In the same way, I want to encourage all of my supporters to identify brick walls they face and break the walls down rather than running the other way. If I can get through chemo, radiation, and a bone marrow transplant, you can get through that crazy research paper or find a job somewhere. Sometimes, it just takes the will to get out of bed and force your feet to hit the floor.

Well, there's a little wisdom for ya I guess...take it or leave it! I'm not trying to sound preachy, but to be honest? I don't want my experience with cancer to be the worst thing that ever happened to me. I want to see it as a learning experience, even if it's an experience nobody wants to have to learn. Because I still have such strong faith that there's a reason and a purpose even for my horrible diagnosis, I choose to see my glass half-full. I choose to fight for my life. Although challenges are coming up quickly, I'd rather just get them all overwith so I can be healthy again and get back to the way my life used to be: school, an apartment, friends all around me. However, I can promise you I myself won't necessarily be the same; to quote Wicked (as my sorority sisters and I did all through recruitment), I've changed "for good."



Monday, January 14, 2013

There's No Place Like Home...For Now. Finally, the Final Info About My Bone Marrow Transplant!

I wanted to add to the title: *clicks sparkly shoes together*...but it was just too cheesy to use a Wizard of Oz reference, and I was worried younger readers may not even understand the reference anymore! :) Anyway, I have LOTS of HUGE news to share that I know many of you are really eager to hear!

First of all, yes, I am finally HOME and it feels absolutely incredible! Getting to see both of my parents and my 3 younger siblings on a daily basis is a wonderful treat after spending so long in the hospital. I even got to see my older sister, who's normally away at school, for the first few days I was home since she was still on Christmas break! In case you've lost track, I've been in the hospital since September 19th, minus the one week I was allowed home between the first and second rounds of chemo sometime in the fall...October-ish? finally spending some time as a family was something I've missed being gone for so long. After the second cycle of chemo I was finally in remission, so my doctors wanted to start the 3rd cycle immediately rather than letting me go home for Christmas. When I posted that I was in remission, my INCREDIBLE friends and supporters I met my first summer working summer camp at Lifetime Fitness, Maryclare and Olivia Flores, made a video with their acapella group at Depaw University. I do want to say that I have had a HUGE number of videos posted in support, including one I'll talk about later from my sorority sisters, and I will definitely be including links to other cool videos people have made in future posts! However, I remember my Mom showing me this video in particular one night at the hospital, and I just remember sitting there absolutely SOBBING into my Mom's shoulder. It was so overwhelming (in a good way!!) to know that an entire acapella group of mostly strangers wanted to dedicate a song to me at their concert in front of what sounds like a big audience! In addition, the song that they chose was so perfect.  Here's a link if you'd like to watch!

I posted this video in particular because I do have some news to share that at first will sound like pretty bad news; however, I PROMISE that it's not really that bad after all.

The reason I went through those first 3 cycles of chemotherapy, which I am FINALLY DONE WITH!!! :), was to prepare my body for my bone marrow transplant and hopefully get me into remission before the actual transplant needs to be done. We were told by my Pediatric doctors that the less cancer in my body at the time of transplant, the better my outcome will be. Back in December when I was told that I was finally in remission after my second cycle of chemo, my parents and I were SO happy! Although I was disappointed that I didn't get to go home for Christmas, I was totally fine with missing ONE Christmas out of a lifetime of Christmases if it meant I'd stay in remission.

After my 3rd cycle of chemo, I had a final bone marrow biopsy to make sure I was still in remission before sending me off to my new transplant doctor, Doctor Stiff. Before I keep going, I want to take a minute to talk about Dr. Stiff. Quite a while ago, I had to make a difficult decision of where I was going to have my bone marrow transplant; at Loyola, they don't have a pediatric transplant team, so I'd have to transfer to the adult transplant service. When I was first admitted I was on the adult oncology service for the 3 cycles of chemo that were planned, and I didn't have a great experience with the adult doctors. Transferring to peds made me much more comfortable and happy. However, meeting with Dr. Stiff changed my perspective on adult medicine at Loyola. Although he doesn't have the best bedside manner, which I had been warned about numerous times, he honestly treated me as an individual. I knew that to him, I wasn't just another chart or another patient. I was Sarah, a patient with a very specific type of Leukemia that he had treated many times in the past. He already had a plan for me based on the top-of-the-line, brand new research he kept extremely informed on, and he did his best to joke around with me about the Cubs vs. the White Sox (Go Cubbies!!). I also learned that he is a world-renowned bone marrow transplant doctor,  and that people literally come from all over the world just to get a bone marrow transplant from him! After realizing that I was extremely blessed to have the opportunity to be treated by this doctor, I knew that being treated by Dr. Stiff and his team was going to be my best bet for a successful transplant. Prayer played a huge part in choosing a hospital and a doctor, and I still believe that God's plan for my transplant is to have the transplant from Dr. Stiff. Thank you to the people who were praying constantly for the "decision making" that my parents asked others to pray for to have a firm answer. After all of the prayers, God made the answer extremely clear to my parents and me!

Going back to my earlier story...after my 3rd cycle of chemo and the bone marrow biopsy done after, I got what I thought was horrible news: I wasn't in remission anymore. To be classified as "in remission," I had to have less than 5% of "blasts," or the leukemia cells. Instead, I was at 7%. My Mom and I began speculating what that meant for the transplant: more chemo? A worse outcome? Did it matter that I was only 2 or 3 percent over, rather than being 10 or 20 percent over? We had never been told that I had a chance to relapse after reaching remission, which also made us both feel like the truth had been withheld from us for however many months since we celebrated remission. If I had been told there was a chance for relapse, I think it would have made the news a little less shocking. Thankfully, the very same day we were told the bad news, I had an appointment with Dr. Stiff to go over the plan for my transplant. When we met with him, he explained to us that with my specific type of Leukemia, he wouldn't have considered me "in remssion" unless I had reached 1 or 2% instead of the 7% I was at...and, more surprisingly, I only had a 2% chance of even reaching remission because of the complications of my type of Leukemia. Again, this news was a shock to my Mom and me, but we were comforted when Dr. Stiff told us that he wanted to proceed in the exact same way he had had planned for a while now. No extra chemo, no hoops to jump through; Dr. Stiff anticipated that I probably wouldn't have been in remission anyway and planned accordingly. I still have a great chance of successfully making it through transplant, contrary to our previous notion that I'd need to be in remission before transplant. We had a little bit of a sigh of relief before LOTS of big news.

As we sat in Dr. Stiff's office and he told us exactly what was going to happen over the next few months during my transplant, I held back tears because of how overwhelming all of the information is. I was able to stay calm and collected while meeting with the doctor, but the second he walked out of the door, I lost it. Hearing things like "At this point of transplant, a simple cold can kill you" or, "I've had patients who have relapsed as early as 30 days after transplant" is really scary and hard to hear. However, as hard as it was, I appreciated so much that he was willing to be absolutely upfront and honest with me and give me all the details of what I was going to be going through. I want to share with all of you a basic plan of what my transplant will entail:

- I'll be at home for about 3 weeks total, going in for my transplant sometime at the end of January. During this time, I'm strengthening my body as much as I can with breathing exercises, walks, and trips up and down stairs to help me be as strong as I can when I have to go back for transplant. I also have LOTS of tests I have to have back at Loyola during this time.

- Next, I'll have 4 days of twice-a-day radiation (which is totally new for me) at Loyola. We haven't decided yet whether I'll have to be admitted or whether I'd be able to do it outpatient and come back home every night. After radiation, I'll be admitted for 2 days of chemo, which will be pretty uncomfortable. This is all to wipe all the cells out of my bone marrow to prepare it for my sister's healthy donor cells!

- My sister will come to Loyola on the day of my transplant, which will be very soon after I'm done with the chemo. They'll take the stem cells out of Mary with a special machine I've talked about in the past (they do it by IV, so Mary won't have much pain besides some needle sticks), and put the cells right into me.

- My transplant is considered "day zero." From then, I'll have about 2 weeks of recovery in the hospital.

- After recovering, I'll go to an extended-stay hotel that works with Loyola for cleanliness and such, and start my "100 days of isolation." I won't literally have to be isolated for 100 days; I'll be able to have visitors at certain points! However, at some points during the 100 days I'll be EXTREMELY neutropenic (meaning, in case you haven't read previous posts, that I basically won't have any immune system), even more so than I was with the chemo. At those points, I'm going to be using online video chats a LOT! :)

- Once I'm done with my 100 days, as long as I don't relapse...I'm done for good!!!

Your prayers and support are what got me through my chemo, and now I'm going to need lots of prayer and support long as you aren't sick of me yet! :) Prayer for endurance here at home while I try and try to get stronger...for Mary, as my donor, that she has an easy experience and continues to be the brave little sister afraid of nothing...for the radiation and chemo, that I have as easy of an experience as I possibly can, although it won't be "easy" in general...for my time in the hospital, that I regain strength quickly and respond to the transplant well...for the 100 days, that they pass quickly and that I don't get sick or have any complications that hold me back...that I won't relapse after transplant...for my family, that they adjust easily to the changes that will take place for all of them during my transplant and 100 days...and for all of my friends, family, and strangers who have been more supportive than I could have ever asked for!!!

On a different note, I'm SO excited to FINALLY be tapering off of the strong medications I've been on and slowly finding it easier and easier to do little things I had so much trouble with before: reading, writing, typing, etc. I'm still working on all of those things for sure, but hopefully I'll be back to normal sometime soon, at least with reading and writing!!

Lastly, one more request: PLEASE text me or call or text my parents if you'd like to drop by or visit!!! I still have to take LOTS of precautions while I'm home, and both my family and I are still learning to adjust. Having drop-by visits is really difficult because of how much I'm sleeping and all that my family has going on, especially with all of my testing back at Loyola; so PLEASE contact one of us about visiting instead of making a surprise visit! As much as I'd usually appreciate being surprised by a friend, right now it's much easier for all of us to know who's coming on what day. I honestly haven't felt up to having visitors in probably months, and I haven't had anyone visit me at home yet because of all of the appointments I've already had and trying to fit in some family time. If I don't get to see all the people I want to see while I'm here at home, it's just because tests and appointments for me, and family time for all of us, is more important right now than having visitors. Keep in mind that there's always Skype video chats when I'm awake and other options for staying in touch! It's been kind of weird for me to adjust from college, where I'd see friends every day, to this life, where I barely see friends at all. I hate it. :( However, my health has to come first, and my family second, so I'm doing my best to balance everything. Hopefully by next fall I'll be back at school again, hugging all of my friends and not having to worry about stupid face masks and hand sanitizer! :P

Love you all and thank you, for the millionth time, for your unending love and support. You're all helping me get through this, whether you know it or not!!! :)


Monday, January 7, 2013

Update of Some Fabulous News!

Well, as much as I LOVE the peds floor, one of the downsides is the noise: I've gotten a whole hour of sleep tonight between crying babies across the hall and a seemingly always incredibly loud next door neighbor. While waiting to get something from my nurse to let me finally get some kind of rest, I figured I'd channel my frustrations into sharing the great news my doctor had for me today with all my amazing supporters! :) (Just wish me luck my neighbor lets me at least get a nap tomorrow...PLEASE!)

 Today, or technically yesterday (Sunday), my doctor told me that my white count, the number that has to get to a certain point before I get to come home, is almost to the goal, after another bone marrow extraction and spinal tap to verify that my bone marrow is doing what it should, I will be going home sometime this week!!! After almost 4 months straight, minus the week I was home between rounds 1 & 2, I am beyond ready to be done with being woken up to check my vitals all the time, being stuck in the chest weekly to change my port needle, and especially listening to unnecessarily loud neighbors...for starters. I absolutely can't wait to breathe in fresh air again and have more than a single floor to roam around. Sometimes it is comforting to be in the hospital, because if anything goes wrong, you have immediate access to doctors and nurses and all the health equipment in the world. Getting a fever, for example, can happen pretty easily to kids going through chemo, and we're given antibiotics right away to kill whatever bug we pick up. If a fever happens at home, I have to be rushed back right away to get my antibiotics by IV. Regardless, breathing in the sweet, fresh air versus the dry hospital environment is an incredible matter how scary it is sometimes to think about fevers or getting sick, there's definitely no place like home!

When my doc told me my counts, he said right after, "That is YOUR marrow that got your white count so high; yours!" After 4 grueling months of chemo, surgeries, tests, tubes...FINALLY my marrow is ready for brand new, healthy stem cells to make my body healthy again. I've been through hell and back in a lot of ways, and I'm more than ready to just be DONE with treatment!

As I move on to the final phase of treatment, I'm remembering all that God has blessed me with so far, even through the pain, and I see that He is taking incredible care of me. Yes, there's going to be pain and suffering in life, and everyone has different life battles. But, remembering the "Footprints in the Sand" story I referenced in one of my very first posts, I know that there have been many times God has picked me up and carried me through; through my parents` nonstop love and care, through those special nurses and doctors who have gone above and beyond their call for my sake, and through the letters, packages, and undying support that reminds me to keep pushing and keep fighting. I'm learning that no matter what life throws at me, God either gives me the strength to fight, or carries me through when it just feels too hard. I hope someday I'm able to share this experience with someone ready to give up...reassure him or her that when you can't bear the cards you've been dealt, you sure as heck have someone bigger and stronger willing to take it instead.

Rambling, as usual, so I'll try to get some shut-eye. Goodnight and, as always, lots of love all around! :)


Friday, January 4, 2013

New Year, New Perspective...New Life!

Merry Christmas, Happy Hanukkah (Since I know I have some Jewish supporters! :)), and Happy New Year!!! And a pretty great new year it's been so far: My counts are FINALLY beginning to rise, which means quite a few things:
- I have more energy in general and I'm stronger and more balanced
- My pain is almost totally gone, which means going down on my pain meds, SLOWLY so that I don't have withdrawl symptoms since I've had to be on them for so long
- Once my counts reach a certain point and I'm pretty much pain-free, I get to go home for a few weeks before coming back for transplant!
So, if things go as planned, hopefully I'll be home sometime in the coming week to rest and let my body heal as much as possible before starting my bone marrow transplant. While I'm home, however, I'll have to come back to the hospital pretty frequently to have my counts checked and to go through lots of pre-transplant testing. When I'm finally ready to be readmitted, I'll have to move up to the floor that's specifically for bone marrow transplant patients rather than being on the pediatric floor; that means I'll have a new doctor, new nurses and techs, and a totally new environment--without an art room. :( However, the floor is currently being remodeled, so I'll have a brand-new, really nice room. In addition, the floor will have an exercise station (After transplant, exercising every day is required to keep your body strong), "meditation" room where I can go to be alone and pray or just have some quiet time, and a family room for visitors. My social worker, who mainly works on the transplant floor, has assured me that my new room and floor is going to be GORGEOUS.

I think most people would expect to be excited to move to a brand-new, beautiful room and finally be in the last phase of treatment after 3 long and unimaginably difficult cycles of chemo. Instead, if I'm being totally honest, I'm nervous and even pretty scared. I'm so comfortable with this floor, my amazing nurses who have become close friends, and having access to an art room and all the movies and video games I could possibly want. I don't like big changes; after almost 4 months here, it's kind of like home.

It's almost ironic that this huge change in my life is happening at the same time lots of people are deciding to change their lives as well. New Year's resolutions are usually pretty big changes to benefit oneself, like living a healthier lifestyle with diet and exercise or spending less money and saving more. Those changes take a strong, dedicated person. I think the majority of people would admit that New Year's resolutions tend to fall off after a few weeks or months. However, there are a select few who actually stick to their goals and achieve them. I think the hardest part of making big life changes and sticking with them is being willing to be outside of your comfort zone for a while and eventually redefining your definition of what's comfortable. It's not easy, but it's what I've had to do so many times already during this journey. There are the huge changes I was forced to get used to, like having a port surgically implanted in my chest to make blood collection easier, and especially living in a hospital rather than my college campus. Then there are the smaller changes: losing my hair, eyebrows, and eyelashes; wearing pajamas and sweats 24/7 rather than putting together cute outfits. I've had to allow myself to be uncomfortable in a lot of different ways.

What I've learned from all these difficult changes is that once you have the courage to get on the other side of the lines you draw in life, you find that the other side isn't as scary as it seemed before. I'm not going to say that change is easy, but as things change, so do your priorities and your outlook on life. When I was first diagnosed, I was terrified to lose my hair and even more scared to lose my eyebrows and lashes. I didn't want to look "sick" or have people feel sorry for me. However, now that it's all gone, I've realized that I almost fit in more here in the hospital. The majority of us who stay here long-term are oncology kids getting chemo, so there are lots of us "baldies" and people don't really take too much notice. :) Even being outside of the hospital, I have learned to spend way less time worrying what people think of me. Cancer has made me realize how frivolous it is to worry about what others think, even if they do think I'm "sick" or feel sorry for me. By being forced out of my comfort zone when it comes to physical appearance, I see from the other side how useless it was to spend time worrying what a stranger (or anyone really) thinks of me.

You'd think with that life-changing realization about change that I'd be fine with moving up to the transplant floor. But, since you can't really control the emotions that come and go, I guess it's one of those lessons you have to be taught over and over again. I can't help feeling nervous about moving to a brand-new environment and having brand-new experiences; it's out of my control. I do have control over how I decide to act according to how I feel. Rather than carrying the burden of my bundle of nerves all alone, I do my best to trust God, my doctors and other caretakers here at Loyola Hospital, and my parents that this is the right medical choice...even if it's a little scary. I have SO much care and support from more people than I can imagine; I know that there are many, MANY people I don't even know who have followed my story and are supporting and praying for me even though they've never met me. In addition, having the support and love of all of my family and friends is, once again, getting me through a difficult time. I know I sound like a broken record with how much I talk about all of the support I receive, but when I know that I have prayers and love from such a multitude of people it makes me feel stronger and less afraid. There's no question on whether or not I can make it through transplant; I know I will!! I guess it just comes down to trying as hard as I can to keep a positive, hopeful attitude as often as I can. Obviously I can't be positive all the time, but lots of studies have shown that your mental beliefs can have big effects on your body. So, the more I either think positively or believe the awesome words of all my supporters, the better I believe I'll do physically. It's not going to be an easy challenge to have to pursue, but, as my Mom reminded me a couple of days ago after reading a note from a family friend, once I'm done with my transplant I'll literally have a new life and a new birthday, a wonderful gift from my little sister. Yeah, be jealous...I get TWO birthdays! ;) I want to add another big THANK YOU to Mary for giving me the most beautiful gift she ever could. I love you little sister and I'm thinking about you all the time!!! <3

I hope all of this is coherent and legible...I'm still on medication that effects me mentally, which includes reading and writing. :P Regardless, I wanted to make sure to give everyone an update and not leave my family, friends, or supporters without knowing how much better I've been feeling! :) My counts are still extremely low compared to someone who's healthy, and I'm still sleeping more than usual, so as much as I would love to have some visitors, I would still appreciate a text/call to my parents or me before visiting! How I'm feeling, like if I have nausea or need more sleep, is still day-to-day and my immune system is still very, very weak. I've still been recieving beautiful notes and cards of encouragement, and I read and save every single one!!! I have the BEST support system a girl could ever ask for. :)

Lots and lots of love and thanks, as always!