The title of this post is actually a bit deceiving because before I can talk about the weekend, I know you all want to know the treatment plan. Treatment plan news is never wonderful, because keep in mind that the options are two and a half years of chemotherapy or a bone marrow transplant, which takes less time but is a lot more intense. The group included me and my parents, my two doctors, my outpatient nurse, and my social worker. The doctor started with a very long explanation of how leukemia treatment has changed since the first time I went through this. Before, after the first phase, they would look at the bone marrow under a microscope and determine the results. Now, a new molecular test can detect levels of “minimal residual disease” or MRD that can’t be seen under a microscope. This allows for a much more customized treatment plan. For me, since this is a relapse, if I have an MRD of .1% or greater, they recommend a transplant. If my MRD is less than .1%, they recommend the long standard treatment. This information is new, within the last few years, so there isn’t much long-term data, but they have enough to predict the success of different treatments based on the MRD number. At one point, we stopped the doctor to ask if he knew the number or was waiting for his fellow to come in with the papers. He said he did, but it made more sense to explain this first. Not surprisingly, he was right, because I absorbed very little after they told me my MRD number was .12%, only .02% off from the outcome we were all hoping for and trying not to expect, but pretty much expecting. Like I’ve said before, transplants terrify me. Two and a half years is long, but I’ve done it before and know what to expect. The good news is that under a microscope, my bone marrow shows no signs of leukemia. Unfortunately, it was hard to get excited about that at the time when I felt like I had been run over by a train. One of the long ones where you lose count when you try to figure out how many cars there are. The social worker didn’t help things. “What are you feeling right now? I know you must be thinking a lot, but what’s on your mind?” Go away, I don’t want to talk right now and don’t think I could form a sentence if I tried. I just kept shrugging. Luckily, I didn’t need to make any decisions that afternoon (this being 19 thing is getting old now), because for either treatment, the next month is another round of chemo. Hopefully at the end of the month I will be down to .01% MRD, which is what they hope for to proceed with a transplant. Although I didn’t sign the papers that day, I’m leaning toward a transplant. They said if I went through standard treatment again, and it didn’t work, the transplant wouldn’t be as successful and my leukemia would develop resistance to the medicines. The research is there, and even though it’s fairly new, they’re using it for a reason. It’s terrifying, but a shorter treatment will be nice, especially at this point in my life. The transplant treatment path involves full body radiation to get rid of my bone marrow, and then I’ll get my sister’s cells through an IV. Somehow, it finds its way to where it needs to go. Unfortunately, transplants require a hickman catheter which is partly outside the skin. Last time, I had a port, which is completely under the skin so things like showering are simple. This time, they plan to give me a port on Monday so that I don’t need a hickman yet. I’ll only have both for the short time that I actually need the hickman, and then I’ll be back to just a port for a while. I don’t want my sister to have to go through this at all, but the doctors said young donors bounce back pretty quickly and they pointed out that the hospital has lots of ice cream. My dad told her what’s going on, and I told her there would be ice cream and she left the room with a big smile on her face. That made me feel a little better. My mom, sister, grandma and I were planning to head to PA to help with wedding preparations that night, but my mom and I hadn’t started packing because the weekend wasn’t something we could really focus on until we had our answers. We quickly packed and ate dinner, but it was still a late night until we got there. Remember how I was looking through old photo albums? Now that it’s past the wedding I can explain the project. Each bridesmaid was making a few scrapbook pages for the bride. I’ve obviously known my cousin since before I remember, so some of the cutest photos of us are only in albums in a closet in our house. I didn’t want to cut up the originals so I scanned them and tried to print them on my printer. We looked green. I sent them to CVS before noon. When I tried to pick them up at 8 that night, they hadn’t been printed yet. So much for one hour photo! On Friday, I took them on a flash drive to the CVS near my aunt’s (we had to get some hand sanitizer for her house and the wedding anyway) and I got them printed while I watched. My sister helped me make my two scrapbook pages, which I think turned out pretty good, though in my rush I forgot to take a picture. Then we went to help set up for the reception. I had to sit down every so often but overall I felt pretty good! I hadn’t gotten any chemo other than the spinal tap in two weeks so other than a little nausea, I felt fine and my counts were great so I didn’t have to stress as much as usual about being around other people. A group of us went out to lunch at Panera, and as it turns out, Panera was just what I needed to get over my not eating all week! I ate all of my food, and almost half of my moms. Oops. We headed to the nail salon after lunch and my nails are now a wonderful shade of dark sparkly purple. Fortunately, I had time for a short nap before I had to get ready for the rehearsal and dinner. The Lehigh chapel has the longest aisle ever and I’m not used to walking slowly, but everything went pretty smoothly. Dinner was at a local restaurant, but it was hot food set out in a sort of buffet which I’m not generally supposed to eat right now. However, the restaurant was very understanding and let me eat as soon as they took the covers off so nobody else had been walking by breathing on it or anything. They even offered to bring me a plate fresh from the dishwasher. People are awesome, and the food was delicious! Saturday was a blur of fun and excitement. I woke up really early to shower and go get my “hair” and makeup done. Everyone in the salon loved my wig. It’s synthetic hair, so it couldn’t be straightened or curled, but I ended up with a braid down the right side that led to a knot on the lower left side. It looked fantastic and there was no way to tell that it was a wig. I took a quick nap on the couch while I waited for someone to do my makeup. The other bridesmaids are awesome and covered me up with their jackets so I could be as comfortable as possible. They all took such great care of me throughout the whole process and I can’t imagine a better first-bridesmaid experience. After hair and makeup, it was time to put on our dresses! I’m not sure why I thought putting my heels on upstairs and trying to walk down stairs in them was a good idea but I survived. A party bus took us to the church and the ceremony went smoothly. It was beautiful, and I was trying so hard not to cry and ruin my makeup. After lots and lots of pictures, in the church, around Lehigh’s campus (why was I so against going there again? It’s gorgeous!), and around town, we went to the cocktail hour and then the reception. Everything was gorgeous, with every little detail worked out, down to baskets in the bathrooms filled with everything you could possibly need at a wedding reception. I stayed as late as possible; somehow I wasn’t tired. There are tons of pictures from the wedding and I can’t wait to see the ones the wedding photographers took, but here’s one for those of you who haven’t already seen them all on Facebook. I picked the picture it was easiest to crop myself out of, because I don’t know if anyone else wants to be on here. This morning we drove my boyfriend back to Drexel and I got to visit with some of my friends there and see the room I would have been in. It’s a wonderful setup and I wish I could be there, but seeing everyone was the next best thing.
Overall, the weekend was an extremely refreshing experience. It felt normal. I could participate in most activities, didn’t need my mask quite as often, and I got to see so many people that I love all at once. We all had a great time and weren’t worrying about returning to reality tomorrow at 5:30am when we need to be in the Hopkins operating room for surgery to get my port. Special thanks to everyone who made this weekend AWESOME, and congrats to a wonderful couple!
1 Comment
Melissa
11/27/2013 12:18:09 am
love you!!! you were the best bridesmaid a bride could ask for :) ...and your scrapbook pages were my favorites!!
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
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