I know I missed my usual Sunday night post, but in this case, no news was good news! I was busy enjoying my last week at home and I got more good news as well! On Wednesday, we got a call from my transplant coordinator. Since my MRD is zero, I don’t need as much chemo as they originally thought! I was supposed to be admitted on Friday (the 29th) for two days of one chemo and two days of another chemo, followed by three days of radiation. Now, I only need the second chemo so I don’t need to go in until Sunday! Two fewer days in the hospital, two fewer days of feeling awful, and best of all, two more days at home with my friends and family. Even better news: the medicine I don’t need is the terrible shower medicine that burns the skin if you don’t shower every 6 hours! Sometimes my counts cooperate. In addition to the good news, I had a wonderful visit with another one of my teachers that afternoon. On Thursday, one of my friends showed up with lots of goodies, the most notable of which were a game relating to deer (did you know reindeer are the only species of deer where the females have antlers?) and A CHRISTMAS TREE! It’s about 3 feet tall and artificial and perfect for the hospital! Apparently it has to be approved once it gets there, but I think (hope) it will pass inspections! I already have some mini glass balls that I’ll definitely be taking to decorate it. I realized I won’t be able to help pick out our real tree this year, but since I won’t be home to see it, it’s probably better that way. One less opinion can only make the decision process easier! Friday was a relaxing day. I spent the morning with my mom and her friends. In the afternoon I worked on my thank you notes (I like writing the notes, I just wish they’d mail themselves!) and went grocery shopping. We could get a free turkey up to 20 pounds, so of course we got the biggest one we could find even though we’re only having 7 people for Thanksgiving. I’m not a big fan of turkey, so I guess everyone else is going to be eating a lot! Saturday was my sister’s birthday and I was very thankful to be home for it. Before the fertility delays I thought I’d already be inpatient. It was a great birthday for her, between our presents for her and all the other generous gifts from friends and family. She’s been making lots of bracelets, building treehouses with legos, and playing lots of games on her iPad mini (so “we match”). I showed her how to get emojis and I’m excited to be able to message or Facetime her when I’m in the hospital, plus we’ve been playing Scramble and Words with Friends. My aunt and uncle came down and we made a castle cake (smaller than usual but still fun), which is already almost gone. For those of you who don’t know, castle cakes are a family tradition. At our big family gatherings like 4th of July and Thanksgiving, we always make one and I’ve been making them with my friends at my birthday parties since I turned 6. I don’t remember that, but I just found photos a few weeks ago. The best part was that so many of the people in the pictures are still my friends today. Even though not all of us have always gone to the same school, we’ve stayed friends. I’ve made some great friends at college, but I don’t think I’m ever going to lose all the friends from home who have been here for me through cancer twice now. On Sunday, we went shopping to get Christmas gifts for the cousins. I felt pretty good, but we still took a break in the middle of the day for a nap. It was really nice to get out and do something normal, plus we picked out some decorations for my room! In addition to the tree, I now have some wintery/Christmasy window clings and a few other things. Don’t worry, there will be lots of pictures! Today, I headed to Hopkins for a clinic visit, my transplant consultation and total body irradiation simulation. Eating lots of food has been helping- I’m getting closer to my original weight! We had half of my transplant consultation then had to go to my radiology appointment. I had to stay still the whole time while they measured every part of me so I can get the right amount of radiation. A few people have asked me what radiation actually is. The simplest explanation is a really strong x-ray that kills fast-dividing cells. I’ll be getting 6 doses of radiation total, but since it can be damaging to the lungs, they block it from getting to the lungs during three of the doses. They did a bunch of chest x-rays so they can properly block off my lungs when it comes time. The room was absolutely freezing and I couldn’t have a blanket during the measurements. Everyone else in the room had on long pants and long sleeves and I had a hospital gown that tied in the back. I headed back up to the clinic, wearing my dad’s jacket to warm me up. They were filming a video to play at a fundraiser game for The V Foundation (because of Jim Valvano, whose name meant nothing to me but he was a coach for N.C State). My dad and I might be in the video, which would air on ESPN around Christmas! During my consultation, my doctor explained the results from all of the tests I had last week. The coolest one, in my opinion, is that my blood type is currently A positive. My sister’s blood is O positive. Once her marrow starts producing cells in me, my blood type will change! Cool, huh? Also, we both tested negative for two viruses that most people have. The doctor was surprised that I’m still negative at age 19, but it’s good that my sister and I match. My organs are all functioning, I’m not pregnant (duh), and the levels of everything in my blood are good. He said not to stress my kidneys between now and transplant, and signals are a little slower getting to one side of my heart than the other, but it isn’t cause for concern. The only bad thing he saw in my results was my weight, which was over 15 pounds below the expected weight for my height. The data was from a week and a half ago, so he was happy to hear that I’ve gained weight since then. Yay food! He also said that eating even if I don’t want to and walking around even if I feel terrible will help me overall during my time in the hospital. Knowing it will actually really help might make those activities more appealing. Then again, maybe not. At the end of the meeting, he actually asked if I was excited. I wouldn't say excited, but I'm definitely anxious to get this all over with and get back to my normal life. Tomorrow will probably be my last day of feeling great for a while and it’ll probably be spent starting my packing (or at least the list) and grocery shopping for Thanksgiving. A small Thanksgiving at home with only 7 people won’t be anything like Maine with 30+ but I’m looking forward to it anyway. It’ll also be nice to be in MD to see my friends while they’re home for a few days. On Wednesday morning, I get my hickman line placed. The surgery only requires conscious sedation instead of general anesthesia so I’m hoping it isn’t as painful as the port surgery. Thursday I’ll be eating lots and food and Friday I’ll be thankful that I’m still home not in the hospital showering every six hours. Basically, the rest of this week will be spent enjoying home, food, and my time with friends and family. I may be sick but there’s a lot to be thankful for this year, including my good counts, a sibling match, science, and my wonderful support system. People continue to amaze me every day. Last night, I had 74 countdown submissions, but I woke up to 102 this morning after posting about it on Facebook last night. The internet is a wonderful thing! As I’m writing this, I’m up to 111 which beats my goal! Another fun number: the document I type these updates in before I post them is already over 30 pages long. Anyway, if you haven’t submitted to the countdown yet and want to, you have until Tuesday (tomorrow) night because my friends will be putting it together on Wednesday! I’m SO excited to read what you all have written and thank you thank you thank you for helping me out! In addition to countdown posts, my family and I have received a lot of generous gifts this week, some from people I hardly know or have never even met. A friend from high school asked what organizations have helped me the most so she can donate money. The generosity and support from everyone in my life, especially in this area, is astounding. I loved Philly last year and can’t wait to go back, but I’ll always miss the people here – everyone there always seems to be in a rush. Have a wonderful Thanksgiving and/or Hanukkah week! I’ll update you sometime next week during my transplant prep. As always, I can’t thank you all enough for your support!
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Any math teacher would say that zero is neither a positive nor a negative number, but today it is most definitely positive! I know I just posted on Sunday but I have a few updates– all good news- and since writing a blog post is more fun than all of the other things I could be doing right now, I decided I’d share right away!
First of all, I’m up to 51 countdown submissions! Keep them coming because MY MRD IS ZERO! Yesterday, I went to Hopkins for a bone marrow aspirate. It was one of our quickest clinic visits in a while, especially for a procedure day – we were in and out of Hopkins in about three hours. Focusing on eating a lot of food has been paying off and I’ve already gained some weight back. In other exciting news, I ate a lot of food before I got the Versed for my procedure, so it didn’t knock me out for the entire day and I got to spend the evening with my family instead of asleep. Apparently I’m only a mess when I take it on an empty stomach. Today, we got a call from one of my doctors saying he’d email us the results of the bone marrow test from yesterday. The few minutes between the call and the email were painful but eventually we found out there was NO evidence of any MRD (minimal residual disease that can only be detected through molecular tests, not even through a strong microscope) in my bone marrow! A month ago, I had an MRD level of .12%, and to proceed with transplant, I needed to get down to .01%. I have a history of my levels being just a tiny bit too high, but finally one of my levels was where it was supposed to be when they wanted it to be there! What does that mean for me? Everything proceeds as planned and I’ll be admitted the day after Thanksgiving! If my level had been too high, I would have had another month of intense chemo and I would’ve had to repeat all of the tests I got last week, which need to be within a month of transplant. Luckily, none of that is necessary. Hopefully, a level of zero also means that during my pre-transplant week, I won’t need the chemo that is cleared through sweat. I don’t know what it’s called, but when I’ve mentioned the “shower medicine” to the nurses, they’ve known exactly what I’m talking about – patients that get it are required to shower every 6 hours (that’s four times a day!) because your body clears it through the sweat and if it sits on the skin too long, it burns. They can’t be quick showers either because apparently people often forget random spots like the back of their neck or behind their ears and get burns there. Fingers crossed that won’t be part of my treatment plan! Thank you all, as always, for the messages, notes, gifts, food, and most importantly, support and love. If you haven’t submitted something to my countdown, please consider doing so! If you already did but want to submit something else, feel free! The form will be open until the beginning of next week. I love you all and am so excited to see what you have to say! After being inpatient last week, this week at home was very refreshing. Unfortunately, over the past few days I found out about multiple other leukemia relapses, not just from camp but also from college. Cancer is everywhere. Going through it once is bad enough, but twice or more is absolutely horrible and relapses often mean bone marrow transplants. I’ve said it before and I’ll say it again: please consider joining the bone marrow registry if you can. You don’t actually donate until you match someone, so you could go your whole life without donating but at least you were on the list just in case. I’m lucky enough to have a sibling match but not everyone does. Visit bethematch.org for more information. On Monday, I finally took advantage of Netflix and started watching Breaking Bad. One of my friends introduced me to it the summer before I left for Drexel, and since then multiple other people have suggested I watch it. For those of you who know the show, yes I have cancer but I will not be starting a meth lab to pay my bills. Chemistry is not my thing. That night, I was soaking my feet in Epsom salt water. I probably didn’t mention in my last post that in addition to my toe being red, my heel was also red. The radiation doctor asked me if I had been wearing high heels (clearly she didn’t know me very well) and I had to admit that no, I actually ran over my heel with my IV pole. By Monday, my toe was pretty much healed but my heel was still pretty red. At one point, I leaned forward, launching my phone from my lap into the water. I grabbed it pretty quickly but I still decided to leave it in a bag of rice overnight. My phone works again, but how many people can say their phone went for a swim because they ran over their heel with an IV pole? Yeah, I’m special. My sister and I both had appointments at Hopkins on Wednesday. She needed a physical and I needed a lot of tests. They needed to make sure my heart and lungs were functioning well enough for the radiation and transplant. Most of the tests were fine, but a few required holding my breath and I thought I was going to pass out. When I got up to clinic, my nurse drew 13 tubes of blood. She had drawn 12 from my sister so I thought I had her beat but it turns out they missed a test so she needs to go back to get one more drawn. The last time she got blood drawn was kind of a disaster, so she was all smiles after this one. She couldn’t believe they got so much blood out of one vein, and she got some good snacks so she was happy. I met with another doctor who I’ve seen around a lot but never really talked to because she takes care of transplant patients. She didn’t give me any antibiotics or frequently ask me if I pooped so I like her already. Actually, it’s more for other reasons but those didn’t hurt. My mom told her about my rapid weight loss since diagnosis (about 12 pounds since the end of August), and I was told to think of food as my medicine. I’m only taking pills on the weekends from now until transplant, so she told me to focus on eating. When I’m full, take at least three more bites. Everyone loses weight during transplant so the doctor said people do better if they have a little more to start with. On Thursday, my dad and I headed into Baltimore to narrow down our living options for my 100 days. My social worker had set up a tour of the Believe in Tomorrow House at St. Casimir. Usually, they only provide housing to patients under 18, but as far as I can tell since they have space and I’m being treated in pediatrics, they made an exception because my social worker gave us a good recommendation. When we got there, we got a tour as if it was definite that we’d be staying there – we saw the specific apartment we’d be in and everything. At first I thought that was strange, but by the end of the tour I was so set on living there that I was glad it was all set up. I’m so excited! We have a two bedroom apartment with two queen beds and two twin beds, so my whole family can easily be there all together. There’s a full kitchen, but the apartment is in Canton so there is also a ton of good food around. In addition, we have the option of going to the dinner every night at the Believe in Tomorrow House at Hopkins, which is about ten minutes away. Hopefully I have a good appetite by then, because the food all sounds great to me now and it’ll be really sad if I don’t want it in a few months. There are seven apartments at St. Casimir which share some common areas such as laundry and a huge dining room and kitchen (though everyone has kitchens in their apartments) so the families can socialize if they want to. There’s also a deck, which probably won’t be used much in January and February, but from the top level there’s a great view of the sunset over the harbor. Prepare for lots of instagrammed sunset photos taken with my technology gloves so my hands don’t freeze. Originally my dad and I had planned to drive by a few more places to see if we wanted tours, but we didn’t even bother because we couldn’t ask for more than what we already had. To summarize all that, we have housing all figured out AND there is plenty of space for visitors! Can’t wait to see some of your smiling faces there! Thank you all so much for your support in my countdown! As of this morning I was up to 38 submissions. My goal is at least 100, so keep them coming! My friends will be putting it together sometime during Thanksgiving week, so you have about a week left to submit something. Thank you, thank you, thank you! I’m getting really excited to read them and have been struggling not to peek. I promise I won’t, but it really is a struggle even though I’ve been at home busy and feeling good so I know they’ll be great motivation when I’m in the hospital. My visitors this week were spread throughout the week. A friend from high school visited on Tuesday, and one of my best friends visited on Saturday. My favorite teacher visited on Thursday with a copy of the school’s magazine which I read in front of the fire the next day (perks of being home!). I loved seeing all the changes, but noticed plenty of things that I worked on years ago that have stayed the same. I miss working on the newspaper and can’t wait to be back at Drexel. Anyway, I explained my need to gain weight and was promised Cinnabon, which she brought this morning. It was heavenly and I feel heavier already. I also spent a lot of time on google hangouts (skype but better) with various friends this week. Technology is great for keeping in touch, especially as flu season picks up and increasing numbers of my friends are sick and can’t visit in person. Eating lots of food has been going pretty well, though I haven’t weighed myself yet so I’m not sure how much progress I’m making. At the grocery store on Friday, my mom let me pick out a bunch of candy from the bulk candy aisle! Yes, I’m a child at heart, so that was really exciting. I also got ingredients for 7 layer dip, though I combined recipes and ended up with 8 layers. I usually only eat meals and don’t snack much but I’ve been making an effort to eat more frequently. I ate almost an entire Cinnabon less than two hours before dinner and still ate dinner. This weekend has been nice and relaxing. I was disappointed to miss the Color Run after having such a blast in the spring, but I didn’t think it was the best environment for me right now. A lot of my friends from camp were there and had one of the color throws dedicated to me and another camper. My siblings both had lots of soccer games but my dad and I found time to teach my sister Yahtzee. I also watched a movie that was set in Hawaii and enjoyed recognizing some of the places, even though half the time they weren’t on the island that the movie implied they were on. My brother was working on a project so he was going through pictures from Hawaii and we relived our vacation. I miss it so much! I’ll be heading to Hopkins tomorrow for my usual bloodwork and also another bone marrow aspirate so they can make sure I’m ready to proceed with the transplant. My MRD number (basically, residual disease) has to be below .01%. If it isn’t, the whole transplant process gets pushed back a month so I can get more chemo to lower my number to .01%. I seem to have a history of being just above their desired mark but I’m really hoping that’s not the case this time. I’m ready to get this whole process over with. We’ll probably find out the results sometime later this week. If everything goes according to plan, I’ll have my hickman catheter placed on November 27th then I’ll be admitted for my long stay on November 29th, better known as Black Friday. I’ll get the transplant on December 6th and will be in the hospital for a few weeks before moving to the apartment. I’m already working on my packing list for that whole adventure and am considering buying a miniature fake Christmas tree if they’re allowed. I already have some mini glittery ornaments that would be perfect on it. If you have any suggestions for my list, let me know! I’ve gotten a lot of texts and facebook messages recently from people I haven’t talked to in a long time, and it continues to amaze me how many people read these posts. Thank you all so much for your never-ending love and support, and I’ll update you again once I get the results of my bone marrow test! If you haven’t posted to my countdown, please do! This week was another one of those weeks with a rough start but a good ending. Before my medical updates, I have a few site updates! I’ve added a few more pages for you to enjoy. First of all, there’s the photo gallery, which includes photos that I’ve taken and want to share but didn’t find a way to fit into my blog posts. Also, the cheesecake recipe is there. I know some of you have been waiting for that! In addition to the photos, I added a countdown page but I’ll explain that later in this post. My last update is adding a spot to put your email address in the questions/comments form so I can reply. I’ve gotten some awesome messages but realized I can’t reply to them. Oops. Live and learn. On Monday, I headed to clinic with my bags packed, ready to be admitted. Well, as ready as I was going to get. After 3 weeks at home with no chemo, I was feeling great and the hospital was the last place I wanted to be. As I was waiting for my appointment, my mom mentioned that I might have a spinal tap that day. As soon as I saw my nurse, I asked her and she confirmed that yes, I was scheduled for a spinal tap. Not that it really mattered whether I knew or not, it was happening either way, but I generally prefer a little more warning. Oh well. The doctor scheduled to do my procedure was in the operating room for another procedure, so my mom and I occupied ourselves by refilling the band-aid books. As a thank-you, I got to keep a box of fun band-aids, which was probably more exciting than it should have been but I don’t remember ever seeing anything but tan brown band-aids in my house. I got some Versed before my spinal tap as always. They didn’t give it to me as early as usual, so I kind of remember the spinal tap. Luckily it was quick and pretty painless, not something I wish I could forget or anything. Unfortunately, the Versed kicked in after and I don’t remember the rest of the day. After a spinal tap, I have to lay flat for a while to prevent spinal headaches, but eventually I went over to my inpatient room, not that I remember any of this happening. They started the high-dose Methotrexate (the reason I was inpatient), which runs for 24 hours. That evening, I watched some of The Voice with my mom but mostly I just remember sleeping. I knew I’d be in the hospital until my methotrexate level was low enough. Getting a good night’s sleep in the hospital is even more impossible when trying to clear methotrexate than it normally is. I was getting a ton of fluids to help clear the poison so I was awake to pee every two hours. The doctors came in on Tuesday morning and told me that walking laps and pooping were also helpful in getting the desired low level. One of the doctors had done my spinal tap (and I knew her from the first time) but the other one didn’t look familiar at all. Turns out I had met her the night before and didn’t remember a thing…darn Versed making things awkward. They informed me that lots of doctors were watching my levels very closely due to a horrible experience I had with methotrexate last time. I got it every few weeks during one of the stages of my 2.5 year treatment and usually I was fine, but one week my body wouldn’t clear it. I was hallucinating and unaware of where I was and I had to take an experimental medicine from NIH that was rushed to me in the middle of the night. Not that I remember any of that, but pretty much everyone else in pediatric oncology does. I’m special… I walked lots of laps but later I had an awful headache. I tried taking Tylenol but it didn’t help at all so I tried going to sleep but I felt too tense and restless. I finally asked my mom for a back massage to help me relax and we discovered that my entire back was tense and knotted. Once I relaxed a bit, my head felt a little better, but I still didn’t want to look at any screens or light. On Wednesday, after as good a night’s sleep as I could expect, my headache was better but not entirely gone. My right big toe was also growing increasingly red because the nail was starting to press against the skin. One of my doctors (the only one there that I’ve met and don’t really like), was worried it was ingrown and getting infected so she started me on some antibiotics and recommended soaking my foot. Throughout the afternoon, my headache got worse. Another back rub didn’t help and sleep wasn’t helping either. My sister had one of her pre-donation appointments so she and my dad came to visit. My dad went in search of some caffeine as another headache cure. Migraines make me nauseous and that one was so bad that I wasn’t keeping food down. The caffeine I drank didn’t stay down long either. My mom took my sister home and my dad and I went for a walk to the other side of the building to see the sunset. On the way back to my room, we ran into the doctor that I don’t particularly like. She started pestering me about whether or not I had pooped, and when I told her no she was not happy. I added that I had been throwing up all afternoon and pointed out that it's tough to poop when I'm not eating. What doesn’t go in can’t come out. She still seemed to think I should be going, and lectured me for not telling anyone that I’d thrown up. I told her the nurses knew so then she was mad that they didn’t tell her. They’d had it under control and didn’t need any prescriptions written, so they hadn’t rushed to tell her (it had only been an hour or so). She asked if I had taken Tylenol, which I hadn’t because it didn’t help the night before, and then suggested a variety of other medications, all of which would have put me right to sleep. The caffeine was helping a little by that point, so I didn’t take anything else. She called me stubborn, which may be true, but hey, the CMA Awards were on that night and there was no way I was sleeping through them. I didn’t explain that to the her, but I’ve gotta have my priorities. At the end of the awards, I took the recommended oxycodone, which put me right to sleep and finally got rid of my headache! Apparently I thanked my nurse in the middle of the night, but again, when I take drugs that knock me out, my memory isn’t so great. It made me so sleepy that my nurse kept waking me up to pee because my fluids hadn’t slowed down and I wasn’t waking up by myself as often as I usually did. Again, I don’t really remember this but I know it happened. On Thursday, I remained mostly headache-free. I had an appointment with the radiologist in the morning. The timing was unfortunate because I needed two IV medicines while I was there, so my nurse had to come all the way to the other side of the hospital to find me. Later that day, my dad and I played 12 rounds of Yahtzee. When I was little, my grandma called me the Yahtzee queen because I would always win but I seem to have lost some of my talent. At the beginning of the week, my doctors had said my numbers would probably be low enough to go home by Thursday, but they were not. My parents switched places again. With the headaches and nausea, I hadn’t been eating much. My first real meal in days was macaroni that night, but my mom wasn’t impressed because I’ve continued slowly losing weight and she wants me to eat more. I pointed out that eating food doesn’t do me any good if I can’t keep it down. Since my levels weren’t low enough, the doctors upped my fluids. Even more frequent bathroom trips – yay! The doctors also kept looking at my toe. I picked at it a lot after soaking it and it was starting to feel better. Of course the doctor who prescribed the antibiotics thought they were helping, but I think my picking at it (which she said not to do) helped more, since it felt better almost immediately after. On Friday morning, my methotrexate level was finally low enough to go home. Thanks to hospital time, we didn’t get home until mid-afternoon. As soon as we got home, my sister was begging to open a care package we received from Cool Kids Campaign. My parents told her we had to wait for everyone, which meant I had to be home from the hospital. The box was filled with stuff for all of us, which I know was a pleasant surprise for my brother who I think gets lost in the chaos sometimes. Last time, he was the middle child when I was sick and my sister was a baby, and now I’m sick again and she’s my donor. Anyway, we all appreciated the package and have already begun enjoying the gifts. I’m sitting under my new blanket right now and my sister wore her fuzzy socks to soccer and has already picked out which ice cream flavor we’re making first with the ice cream maker. I’ve spent a lot of this weekend sleeping to make up for all the sleep I didn’t get in the hospital and catching up on messages and skype calls that my migraines made me ignore. I’ve still been a little bit nauseous but for the most part I’ve been eating real meals again. Two of my friends came to visit today which was a lot of fun as always. We looked through a photo album that included pictures of my 6th and 7th birthdays, both of which both of my friends were at. It’s amazing to have friends that I’ve known for more than 2/3 of my life. The weekend ended with homemade chicken soup and bread so it’s been pretty good! I laughed until I almost cried multiple times today, and my nails have been painted to look like the galaxy. While I was inpatient, we got a little bit better feel for what’s coming up, not just from the radiation appointment but also from the nurses. I’m not sure if I explained this earlier, but when I first relapsed, I got a team of nurses which includes my primary nurse and three other associate nurses. My primary nurse was my primary nurse the first time, and I already knew one of the others from camp. It didn’t take long to become close with the other two as well. Anyway, my mom and I were talking to my primary nurse about the transplant process. The conversation started with me asking about the decorating rules because if I’m going to be there for an extended period of time, especially during the holidays, my room is going to be fun. Even if I don’t feel well enough to decorate, I know a few of my friends already have some ideas in their heads. She explained some of the rules and also said that the people who do the best are the ones who have a routine. Even if I don’t feel like eating breakfast, I should at least think about the fact that I should be eating breakfast and I should set a goal for each day, such as walking a lap around the floor by a certain time each day. She also said that a lot of people make paper chains to help count down the 100 day period and it’s good to find something to look forward to each day. That night, I couldn’t fall asleep because I was worrying about what I was going to do to stay motivated. Even the few days I had been in the hospital this week were rough, and 100 days is way longer than I’ve ever been away from home. My thoughts wandered to some of the blog comments and messages I read that day (side note- if you text/facebook message/comment or message me on my blog/send me mail, I promise I read every word. It takes me a while to reply, but I appreciate all of the messages and I do my best to reply eventually!). Some were anonymous, some from friends and family, and others from people I didn’t even realize knew about my blog, but every one put a smile on my face. It occurred to me that there is nobody better to help me get through probably the toughest three months of my life so far than you! The newest page on my blog is called “Countdown” and has a form where you can submit a message, quote, random fact, joke, story/memory, boredom buster (that I can do in the hospital) or anything else entertaining. Your submission can be any one of those or, even better, some combination. It can be anonymous if you’d like but there’s a space for your name if you want to include it! Two of my wonderful friends will be printing out the submissions and each one will be a ring on a paper chain. The paper chain can help decorate my hospital room and each day I’ll be taking down one ring until my 100 days are up. I set up the form to send the comments to my friends instead of me, so I will be waiting in suspense. The form will be up until sometime the week of Thanksgiving so you’ve got some time to think of something good! My friends will be putting it together in time for me to take it when I’m admitted on Black Friday. I wish I could be part of the crafting process, but I know I’d peek at the messages because you guys are so awesome and I know the submissions are going to be great. Just make sure you submit anything you want in the paper chain to the Countdown tab at the top of this page. Thanks ahead of time! I can’t wait to see what you guys have to say! This upcoming week includes one visit to clinic and lots of pre-transplant tests including x-rays and heart tests. We’re also working on figuring out where we’re going to stay during the 100 day period once I get out of the hospital. I really appreciate the continued love and support, and I’m working on replying to everyone’s messages, texts, and comments – I’m not ignoring you guys! Thanks again for being awesome, and if you have time, think of something good to add to my countdown! Medically, this week was pretty boring, but if you remember back a few weeks, boring is better. I was originally supposed to be inpatient for part of this week, but my stay got postponed until next week because of my fertility preservation efforts (see post below this one if you’re interested in that adventure). In addition to these two posts, I added an about me page for those of you who don’t really know me because you ended up on this page when one of my friends shared the link with you. I also added a form where you can submit questions or comments if you don’t want to post them publicly. My next website effort will most likely be adding a photo gallery so I can include other fun photos I’ve taken that don’t fit well into my blog posts but I haven’t gotten that far yet. Also, for those of you who asked for the cheesecake recipe, it’s coming! I found the cookbook but haven’t typed it up yet. One of my new favorite pasttimes is wasting time on Buzzfeed and sending the best ones to my friends to help them procrastinate (to any of their parents reading this – ignore my last sentence). On Monday, I decided to do something more useful so I started reading The Fault in our Stars around dinnertime. I finished it around 1, which is much later than I can usually manage to stay up these days but there was no way I was going to sleep without reading all of it. Other fun activities for the week included picking online classes for winter term at Drexel, cleaning out some of our pantry, removing the rest of my wedding nail polish (I only mention this because it took a ridiculously long time), looking at the professional pictures from the wedding (gorgeous), riding an adult bike with training wheels (harder than it sounds) and Halloween festivities! I went to my sister’s Halloween parade at school, wearing a wonderful snake hat I received as a gift the night before. That night, I walked around with my mom and her friends’ parents as they trick-or-treated, before meeting up with one of my friends and visiting another friend’s parents and dog. It was a fun and relaxing Halloween and I was thankful to be home visiting with people rather than sitting in the hospital. As I was walking around one of the most popular trick-of-treating neighborhoods in the area, I was amused by how many of the kids recognized me from the crowd at the parade because I was once again wearing my Medusa hat. Numerous kids asked me if I had been at the school, and others just assumed: “I saw you earlier!” I appreciated that they cared more about my crazy hat than the mask on my face. Over the weekend, I spent some time outside because the weather was too perfect not to. The leaves are gorgeous right now and on Friday afternoon a jacket was optional. On Saturday, I went to my sister’s soccer game (she scored two goals!) and team pizza party. This weekend also included a lot of skyping with friends who are either sick or too far/busy to come home which was a lot of fun. This week, we finally found out more of a timeline for my treatment over the next few months. I’ll be inpatient starting tomorrow for a few days to get some methotrexate. I got a lot of this last time, but as far as I know this is all I’m getting this time. I get a high dose tomorrow and I will be in the hospital until I get down to a certain level. Hopefully all goes smoothly and I won’t need any experimental medication from NIH at 2am (yes, that happened once last time. I’m special). While I’m there, I have a radiation consultation. I have no idea what that actually means but I’m sure it’ll involve some important information. Next week, my sister and I both need a bunch of tests done, including an EKG, pulmonary function test, sinus CT scan, and chest Xrays. She also needs to meet with a psychologist to make sure she’s a willing donor. I’m not sure what that does since she’s not old enough to sign her own papers, but luckily she seems pretty willing but doesn’t want the psychologist appointment to take long. My last spinal tap and bone marrow test of this phase (and maybe forever? Trying not to get my hopes up here) are on the 18th. Hopefully my MRD number is what they need to see to proceed with the transplant. On the 25th, I will be officially signing my consent forms, and I also get a “total body irradiation simulation.” Sounds like fun, doesn’t it? The day before Thanksgiving, I get my second line, a Hickman, put in, but it’s an outpatient procedure so I’ll be home for Thanksgiving!! I’ll probably feel terrible after the surgery but I’m so glad my family will all be together, plus my aunt and uncle who are coming down from PA. That will definitely be a wonderful last day of home-cooked food before I’m admitted for my pre-transplant chemo and radiation on Friday. No Black Friday shopping for me! I will have four days of chemo followed by three days of radiation twice a day. My scheduled transplant date is December 6 – Happy new birthday to me! Everyone always asks me what I want or if I need anything. I appreciate all the cards, letters, and gifts I’ve gotten so far (and will eventually catch up on thank you notes) more than words can describe. They always brighten my day, but if you’re reading this now and wondering what else you can do, I have two things in mind for you to do. First of all, if you’re not on the bone marrow registry and you can be, sign up. Go to bethematch.org for more information. Signing up doesn’t mean you will ever have to donate, and you don’t actually give any marrow until you are a match for someone who needs it. Yes, you might be sore for a few days if you ever do donate, but you’re saving someone’s life. Just think about that. I’m lucky enough to have a sibling match, but a lot of people aren’t. Speaking of my sibling match, the other thing I had in mind is sending her some cards/letters/packages. How many fourth graders play two sports plus run 5Ks, know how to program a robot, spell words like subcutaneous and onomatopoeia, play the violin and can say they’re helping save their sister’s life? Not many. Her birthday is the weekend before Thanksgiving, and less than two weeks later (right before some activities that she had been looking forward to and now may not be able to participate in), she’ll be donating some of her bone marrow. She’s awesome. A few people have asked me about bringing food for my family. Some family friends have started a website to organize people meals during my long stay in the hospital, so if you’re nearby and would like the link, let me know. I have a lot of books to read at the moment but at my current rate I’ll be finished in a week so let me know if you have any book/movie/tv show recommendations! I’ll keep you all updated on my inpatient stay this week. Thank you for reading my updates and for all of your love, prayers, and support! This post involves a lot of shots, the kind with the needles. I decided to put all of my fertility preservation adventure into one post for two reasons. First of all, I wasn’t sure if everyone would want to read about it, and second of all, it makes more sense as a continuous post, not broken up over three weeks. The first time I met with the fertility team was during my initial inpatient stay. They told me the options, either freezing some of my eggs or cutting out a piece of my ovary which would have some eggs in it. I didn’t need to worry about them until I found out that I needed a transplant and therefore radiation. We met again, and they explained that they don’t really like keeping ovarian tissue from leukemia patients because sometimes leukemia cells can be hiding in it. It sounded painful anyway so we decided that freezing my eggs would be the best bet. On October 14th, I had my first bloodwork and ultrasound. Thankfully, I’m skinny enough that they could see my ovaries with an abdominal ultrasound instead of needing a transvaginal ultrasound, which sounds positively unpleasant. I needed some infectious disease and hormone tests as well, and when I went to the lab, they took five tubes of blood from me. They weren’t the small tubes either! Keep in mind this is a few days before I fainted in the bathroom – blood wasn’t something I really wanted to be giving away at that point. We got a lesson in subcutaneous shots which I needed to get within two inches of my belly button. One type came in a multi-dose pen that had to be adjusted to the correct dose. Another type needed to be reconstituted (another spelling word for my sister), which involved measuring a proper amount of sodium chloride, then putting it in up to six vials of powder to dissolve the medicine. The doctors told me that I might “feel my ovaries” but the shots themselves shouldn’t hurt much since they were just going under my skin instead of into a muscle. I started the shots the next day and I definitely knew what they meant by “feel my ovaries.” Within minutes of receiving my first shot, I had terrible cramps. They only got worse through the evening, eventually bad enough that I couldn’t move. The next day, I tried using a heating pad which helped significantly. For the first few days, I only needed the kind that was already mixed, but after my next ultrasound, they added another medicine. The doctors seemed happy with my progression and I continued getting ultrasounds every few days. I also kept getting bloodwork, and the lab was puzzled by me every single time. Since that lab is a branch of Hopkins, they had my oncology doctor’s orders in the system as well as the fertility doctor’s. After multiple losses of 5 tubes of blood, I finally said something. As it turns out, the fertility doctor only needed one tube. I made sure that I didn’t lose any more blood than necessary after that. I needed the medicine at the same time every day, give or take about 10 minutes. My mom always gave them to me because I had no interest in giving myself shots. Stabbing myself really didn’t appeal to me. One night, my mom was at a friend’s house for dinner, so I drove over around 7:30 and they got a lesson in reconstituting medicine. On the 23rd, the doctors decided to try a transvaginal ultrasound because they really needed a better picture than what they were getting from the abdominal one. It wasn’t as bad as I expected, but it was not “just like a tampon” like they say it would be – tampons don’t hurt. I was supposed to be going inpatient on the 25th, and unfortunately my eggs were not ready to be harvested. I had gotten Lupron, which tricked my body into thinking I was in menopause to protect my ovaries from the chemo, and this was slowing down my responsiveness to the hormones. They decided they’d ask my oncology doctors for another week, but if the chemo was urgent then I’d have to give up. My oncology doctors agreed to give me another week (I love off weeks!) and I was incredibly thankful. I figured they would, because things can generally be moved a few days, but I was really nervous until I got the official news. The next ultrasound was on Wednesday, a yucky, rainy day with lots of traffic. The ultrasound showed that my eggs hadn’t grown at all since Saturday. They told me it’s possible that my chemo in 2004 damaged my eggs and I most likely would have stopped getting periods in a few years. The Lupron could also have been an issue. Either way, the hormones weren’t working, even at the maximum doses, and they didn’t think I should continue. I refused to accept this and asked to try until Saturday. My chemo had already been pushed an entire week, so it seemed silly not to try as much as I could. What were three more shots at this point? As it turns out, useless, but I’m glad I tried. They didn’t see any changes today from last week, so something definitely isn’t right. They have another leukemia patient that is having similar problems, so at least I know I’m not alone. The radiation I’ll be getting in a month has the potential to kill all of my eggs. I don’t know if they’re healthy anyway, since they weren’t responding to the hormones. Either way, the likelihood of me having my own kids is very slim at this point. I cried for hours. When I started writing this post in my head at the beginning of this adventure, it was going to be called “To my future children” and include something about how I hope they appreciate how much effort I went through to have them. The shots and endless ultrasounds and bloodwork weren’t fun- my stomach looks diseased from all the shot marks and my arms are bruised from the blood draws- but I thought they were for a great purpose. Working hard and ending up with no results is one of the absolute worst feelings. I almost didn’t post all this, but I started this blog to give everyone honest updates and this is a pretty major one. On Wednesday, when they first suggested giving up, I was a mess. I cried more about that than my relapse, or radiation, or any other news I’ve gotten lately (and that’s saying something). A relapse is temporary. Radiation will make me feel miserable for a while, but eventually I’ll feel better. This is permanent. I thought of all the people who have told me I’ll be a great mother and cried even more. A little more thinking and some consolation from my best friends helped me realize that without the medicines that caused this problem, I wouldn’t be here today. Compared to dying, this is insignificant. There are lots of alternatives, and in ten years, when I’m finally ready to have kids, there will probably be even more. I can still be a great mother to whatever kids I end up raising. It’s not the end of the world, and although it hasn’t been easy to accept, there’s nothing I can do about it. In the wise words of the Zac Brown Band, “save your strength for things that you can change, forgive the ones you can’t, you gotta let ‘em go.” Special thanks to my best friends for helping me through this week. I’d be lost without you. |
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
April 2022
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