This Too Shall Pass

Lovely readers,

I would like to start off by thanking everyone who has been supportive since my return from Minneapolis. Most importantly, my family for helping me to transition back into my old life and allowing me to sulk and take time to process the situation. Next, to my friends for never pressuring me to do more than I can handle. And for reminding me what it feels like to do normal things. They keep me sane and remind me that there is more to my life than being sick. Next, to my classmates. I cannot even begin to express how indebted I feel to all of my classmates for sending gifts, cards and prayers my way. Special thanks to my english class and Ms. Bonjour for taking up a collection to get me the BEST box of gifts ever. Before I left town, I made a list of things I thought would make my time in the hospital easier and they literally got almost every single item on the list- and more. Without even seeing the list. Their thoughtfulness is greatly appreciated.

I guess now it's time for an update:

I know I have not blogged in awhile but I needed a chance to get my thoughts together and decide how I wanted to proceed with the next few months. I have decided to continue blogging. My story is not over, in fact, my story has probably just become even more important to tell. I will not stop writing. I have also started my iron chelation. I'm currently infusing 24/7. The pump is actually pretty simple and fairly easy to hide for those who don't know it's there. I have spent the past two weeks really thinking things over and coming to grips with the reality of things. I know that I will be able to find strength in the people that surround me and I know that I will find strength in myself. I also know that other people will find strength in my story and I hope that my voice can be heard.

I have managed to get out of the house a few times since I have been home and even managed to attend a Gnarley Zombies concert. I did not anticipate how hard it would be to get back into my old life, especially knowing that I will have to leave it all again at any moment. I'm living in limbo and I don't like it. It makes it very hard to form new friendships or relationships and it also makes it very hard to plan. I've always been a planner, "living in the moment" is NOT my thing. I consider myself a free spirit but I also value every moment I have on this earth. I don't believe in wasting precious time. Knowing that I can't plan is going to really bother me. However, I think it might be good for me to take a break. Since I was in elementary school it was decided that I would become a writer and move to NYC. I've worked hard, despite all the obstacles put in my way, to achieve that goal. I've pushed myself, usually farther than it was healthy, in order to keep up and surpass others. Now that I know my life has literally been put on hold, there isn't much of a reason to push myself. I think I might take some time for myself and relax and maybe start writing a book or memoir or something of that nature. But lets not get ahead of ourselves, right now i'm thankful if I can manage to get out of bed, eat two good meals and shower every day. But, as they say, this too shall pass. And when it does, I know that I'll be stronger than ever.

Well, that's enough for tonight. Before ending, I would like to share this quote with everyone from Eleanor Roosevelt. Oddly enough, Eleanor has been a hero of mine since the 5th grade when I did a project on her. Come to find out, she died of Aplastic Anemia, the same disease that I'm now fighting. Crazy world. Eleanor represent an independent woman who took it upon herself to make a difference in the world. She surpassed everyones expectations and redefined what it meant to be a wife and a woman. She was a beautiful writer, wonderful speaker and amazing philanthropist. All qualities I wish to have some day. She says, "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must always do the thing you think you cannot do."

**Reason of the day: Eleanor Roosevelt and her inspirational words are always a reason to smile (RTS)**

Coming Home

As you all know, I was supposed to start chemo on Tuesday. However, there was a huge change of plans.

On Monday, we got a phone call from my nurse here in Minneapolis who said that one of my tests had come back with some very bad news that could effect transplant. We met with one of my doctors on Tuesday (the day I was supposed to start chemo) and basically told us that transplant is now off the table for now. Here's why:

I've been getting frequent transfusions for probably close to two years now. The downside to getting so many transfusions is that blood is filled with iron. A normal person has a certain amount of iron in their body that will never go away. When transfusions are given, more iron is given that can build up and end up causing iron overload, which is what happened with me several months ago. My body has tons of extra iron and no way to get rid of it. This can be harmful because iron overload can cause problems with your liver, spleen, etc. I started a drug called desferal back in august to help lower my iron levels. This is the only way to decrease/get rid of iron overload. When we started the transplant process we tested my iron levels and sent them to my doctor here in Minneapolis and he said that it wouldn't be a problem for transplant. Unfortunately, now he's telling me it would be foolish to transplant now because my iron levels are so high.

Sooo....what now? Basically I have two options.

1) Do the transplant now despite my high iron levels. That would double my risk of death, putting it at about 60%. My high iron levels can lead to fatal problems during transplant. There is no way to treat the liver problems that could occur within the first 20 days of transplant.

2) Go home and do iron chelation (the only way to lower iron levels) for several months/ up to a year. This would require me to live with a needle in me 24/7My doctor said I can't go more than a year without transplant so the hope is that my iron levels would lower enough in that amount of time. However, he says I only have a 50/50 chance of that happening. So, if I go home and wait a year, I could be in exactly the same position that I am now. The risk of waiting is that my health and moral has been deteriorating for the past several months and waiting longer can put me at an even greater risk. IF my iron lowers enough then my risk of death would only be 10-30%. My doctors "say" it's my choice. But, I would never ask my doctor to do something he isn't confident in so basically the decision has been made for me.

So basically the decision is #2. I'm coming home. Hopefully on Saturday. The next several months/year will be spent on the medicine 24/7 in hopes that we can get my iron levels under control so that I can return and get a transplant. I will not be returning to school and now I can't even start college on time. This disease continues to ruin my life. As you can see, I'm not very happy about the situation. I was originally diagnosed 5 years ago and have known for several years that a transplant was unavoidable. I literally got within 24 hours of FINALLY starting this process in order to move on with my life as a normal, healthy human being....and it was ripped away from me. Again. Now I will wait. Right now, I'm feeling pretty devastated, depressed and hopeless. My family and I mentally and emotionally prepared ourselves for this difficult journey, we got rid of our cat, packed up our things, accepted gifts from supporting family and friends and left everything. To now postpone this for several months is unfathomable. When will I get a break?

update

Didn't start chemo today. More details later.

Work-up Week

This week was our first week in Minneapolis and it's what they call the 'work-up week'. I spent the week going to appointments and check-ups as a part of the pre-transplant protocol. Here's how it went:

Sunday: My mom and I left KC around 9 am and made the drive to Minneapolis. We arrived at the Ronald McDonald House around 5 pm and got a quick tour of the house. This place is huge! There are four floors, four kitchens, four "houses" (wings), several play rooms, an indoor basketball court, a workout room, several fire places, several living rooms, a scrap booking room, movie theatre, arcade room, etc. Our room is in house one and it's basically like a hotel room. There are two levels, on the first floor there's a living area with two beds, a bathroom, a closet and desk/tv area. The second level is actually a loft with a spiral staircase and two beds. I've claimed the loft as my own. Every night someone caters a dinner for everyone living in the house. It's really nice here and everybody is very friendly.

Monday: Monday was my first day of appointments. I first went to the Bone Marrow Transplant (BMT) Clinic so that I could get some labs done and meet with one of my doctors. Then I had appointments to get chest x-rays done and to get an EKG done.

Tuesday: I had appointments in the morning to get a ferriscan done and a pulmonary function test done. Then my mom and I went to the Mall of America and ate at Bubba Gump (one of my favorites) for lunch. Afterwards we did some shopping and I spent tons at H&M. I bought several hats to wear when I lose my hair.

Wednesday: In the morning I had a consultation for my surgery to get a hickman put it. For those who have seen my port (the scar on my chest), a hickman is very similar. I have to get surgery to get it placed and then it will sit on the left side of my chest and it will be used for getting medicines and blood throughout transplant. The surgery is kinda freaky so I won't explain the process. Thankfully I can get it removed in a few months and it won't leave a scar like my port. Then after the consultation I had an appointment to get an echocardiogram and then I had an appointment to get sedated and have another Bone Marrow biopsy. Needless to say, I spent the rest of the day in bed with a sore hip.

Thursday: This was my last day of appointments. I first met with a hematologist, then had a consultation to prepare me for radiation and then I had another meeting with one of my doctors. We went over the test results from the week- so far it looks like everything that needs to be normal for transplant (heart, lungs etc) came back normal. Meaning there isn't anything that would stop me from getting my transplant. They also set the date for starting. Looks like I will be admitted into the hospital on tuesday to get my hickman put in and to start chemo. That starts the ten day countdown. Meaning transplant day would be December 18th, a week before christmas!

Friday: Today I slept. All day. It was wonderful. I was exhausted from our long week so I basically laid around and acted lazy all day. I checked out the scrap booking room and got some cool stuff to start working on for my scrap book. I also got my first package in the mail! It came from my nurse (Cathy) back in KC. Cathy and another nurse, Teressa, sent me a box with magazines, crossword puzzles, a shirt with the Empire State Building on it and a tin of popcorn with NYC on it. They're setting the bar very high for future presents. :)

Saturday: Today my mother woke me up at the ungodly time of 10:30 am. We went to Noodles & Company for lunch and then explored the college town. As much as I dislike Minneapolis, the college town is kinda cool. The Ronald McDonald house is on campus so I get to see people close to my age a lot and it was cool to see where they hang out. In the afternoon I made christmas funfetti cupcakes and put out like 20 of them for the other residents to eat. They were gone the next morning. For dinner we went to a bar type place that is known for their subs. My mom tried a sub and it was pretty good. I still prefer Jimmy Johns when it comes to sandwiches.

Sunday: Today I slept in again and went to the Mall of America to shop. I got tons of stuff at sephora and mac. Then we went to this awesome italian place for dinner. I even got tiramisu (my favorite) for desert. Tonight I will be doing laundry and starting to pack up my things to move from the Ronald McDonald house over to the hospital. Tomorrow is my last day before I start chemo.

**Reason of the day: On Saturday I was in one of the kitchens making cupcakes while watching some of the little kids play. One of the kids (a post-transplant boy who gets to go home in about a week) was upset because one of the girls had stolen some of his Monopoly money. It humored me to see that a little boy who has been through SO MUCH can still get upset over normal little kid things. Non-jaded (yes, I realize this isn't a word) boys are always a reason to smile (RTS)**