This past two weeks haven’t been too eventful, so I’m combining them into one post. Also, I’m including a quick note about blogging before I get into my updates. I can view simple statistics for this page, so I know that at least a few people have checked my blog every day since I made it public, even if I haven’t announced a new post. I don’t know who you are, and I doubt it’s quite the same people every day, but thanks to everyone who reads these updates and enjoys them enough to come back frequently to check for updates. Within an hour of announcing my last post, it had over 100 views. By the end of the day it had almost 400. I don’t think anything I’ve ever written has been read by that many people, other than articles I wrote for my high school newspaper (and even those...do that many students actually read the newspaper, or just flip through for the pictures?) I started my blog because I thought it would be a convenient way to update everyone and I figured it would be less obnoxious than posting every little thing on Facebook, but it has become so much more than that. Of course my friends and family read it as I expected, but people keep sharing it and I know there are a lot of people I don’t know who are reading my updates. Whatever your reason for reading, thank you. As you’ve noticed, a lot of them are quite lengthy and they take some time to write and edit (some of them are longer than papers I wrote for college courses). Knowing people are waiting for my updates makes it easier to write even when I’m tired or don’t feel great. Some people have told me how much they’ve learned from my posts, and others have told me it reminds them how much they have to be thankful for. I love knowing that something as simple as a blog can make a difference for other people and it makes me even more certain that I want to pursue a career in scientific communication writing about new medical research. Now that I wrote about 300 words about how awesome you all are, I’ll actually update you. I think I forgot to mention in my last post that after I found out how the transplant process works, I decided to drop my classes and get a medical leave for this term. I also don’t think I mentioned that the pain from the mouth sores would be bad enough that I’ll have a baseline dose of pain medicine, plus a button to push to get more if it wasn’t enough. Basically, I’m going to try to sleep through the worst of it, so two classes on hospital wifi were not something I felt like dealing with. Even with clinic visits every day, I was getting behind and realized they were unnecessary stress. I started at Drexel with 34 AP credits, so I’m using all of my hard work in high school to relax and focus on getting better now. Hopefully next term I’ll feel well enough to try again. I also found out that, due to technical difficulties, I can no longer work on The Triangle from here. I sat in my bed and cried. Even though I knew I was going to have to take a few weeks off from it, losing it entirely was terrible. Between losing classes and The Triangle, I felt like everything productive had been taken from me. If you know me well, you know that I like to be productive and feeling useless/like I’m accomplishing nothing is the worst. I know there are people who would kill for a few months to sit around and watch movies, but I get restless. Classes and the newspaper were also major ties to Drexel and my normal life. Normal is something I cling to as much as possible. Some of my friends wonder why I don’t talk about being sick more often, but I’d rather just have a normal conversation and update them when there’s something new to say. Some don’t want to complain about their problems to me because I have my own to deal with, but again, I’d rather have a normal conversation. My life has changed since I relapsed, but it hasn’t stopped and I know nobody else’s has either. The last day I got any chemo was October 11. I wasn’t supposed to go back to clinic until the next Friday, the 18th. They knew by that point my counts would be low enough to need a blood transfusion and told me if I needed blood earlier that I should come in. By Tuesday, I was pretty tired but I didn’t feel dizzy or anything. On Wednesday, I got dizzy if I stood up too fast (and did walk in to a wall because of it, oops) and walking the length of my house was exhausting, but I thought I’d be okay until Friday. My body had other ideas. I got up to go to the bathroom around 5am on Thursday morning. By the time I sat down, I felt nauseous and exhausted and I knew I should call my mom but by the time that thought formed in my head I fainted. My mom heard me fall and the next thing I remember is her holding me up and me asking how she got there. Fainting and not remembering is probably something that should worry me but I’m so sensitive to dehydration that I’ve fainted from that a few times before. I eventually made it back to my bed and was instructed not to get up without someone to help me. We headed to the clinic as soon as my sister got on the bus that morning. The doctors were concerned that I hit my head, but I knew I didn’t fall hard enough to cause a problem. They gave me three units of blood (previously I had only ever gotten one or two), which should have taken 6 hours but they sped it up to only take about 4. I went home feeling MUCH better, with an appointment for Monday (the 21st) to check my counts and probably get platelets. The weekend was incredibly busy, which thanks to the blood transfusions I had plenty of energy for. One of my best friends was home from school for fall break, so I saw her three days in a row. Saturday was my brother’s homecoming dance, so of course I had to go take some pictures. A few of my other friends visited on Sunday, and then I went apple picking with my family. Walking around the orchard was a bit tiring, but 23 pounds of apples were worth it. They’re delicious! For the 24 hours before my appointment on Monday, I was supposed to do a urine collection. I had to pee in a hat (not one you’d wear on your head but that’s what they call it) and save it all in half gallon plastic jugs. It needs to be refrigerated, but luckily ice in a plastic bin is sufficient so it didn’t need to go in the fridge. It’s weird enough having all of my shots in there with the food. What's in your fridge? By Monday, my platelets were dangerously low. They print out sheets with my blood counts compared to the normal ranges. If my counts are very abnormal, they’re highlighted dark gray which means “panic” according to the key at the bottom of the page. Not surprisingly, my platelet count of 10 was dark gray, since the lower range of normal is 150. Platelet transfusions are very quick, so we were home in the early afternoon. Thanks to the white blood cell boosting shots, my white blood cell count and my ANC were pretty normal. Unfortunately, as soon as the shots stopped, they told me my counts would drop by 2/3. It was nice while it lasted. I had a few visitors this week and baked some wonderful food with the apples. The past two weeks have been pretty busy with all of my fertility preservation measures, which I’ll explain in a separate post for those of you who actually want to read about that adventure. I caught up on emails and my blog after those few weeks where I was too busy, sick, or upset to feel like writing. I helped out with layout for The Triangle over google+; it was nice to still be contributing a little bit. On Thursday, I went apple picking again with one of my friends and her friends from school. I went shopping for the first time since I was diagnosed on Friday and finally got some thank you cards so I can write notes to everyone. My boyfriend came down on Saturday morning and I had enough energy to go outside and take a walk which was refreshing. I made an apple cheesecake with my sister (it sounds weird but don’t knock it til you try it) and my grandparents came down for the day today so it was another fun weekend. Thank you all for being part of my life and making a difficult journey a little bit easier. I have another off week this upcoming week so there probably won’t be many updates, but we’ll see!
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We didn’t have much time to sit back and relax after a busy weekend because this week started off quite early on Monday morning in order to be in the operating room by 5:30am. I wasn’t allowed to eat or drink after midnight, and I hadn’t really eaten dinner Sunday night so I was pretty hungry. In addition, we knew that it was going to be a long week because I had to be in clinic every day, and between the two medicines I needed and the fluids to go along with them, each visit was guaranteed to be at least 4 hours. I talked to the port doctor and the anesthesiologists (spelled that right on the first try!) about all of the possible risks, and signed the forms because what else is there to do? When I woke up a few hours later, my chest hurt and I felt extremely nauseous. I spent the rest of the day unable to keep food down. I took as much oxycodone as they would give me and went back to sleep as soon as I got up to clinic for my chemo. The chemo I was getting had the potential to be damaging to my bladder, so they gave me a ton of fluids and insisted I go pee all the time. When moving my upper left side is excessively painful, this isn’t much fun. As it turns out, it wasn’t much fun later in the week with less pain either, but it was better. Anyway, the fluids are room temperature so I was freezing. Luckily, there is a blanket warmer, so every time I asked for another blanket, I got a warm one to add to the collection I already had on top of me. Despite the residual anesthesia and the high doses of pain medicine, a doctor came to talk to us about the transplant process. He was actually my doctor the first time around, so we already knew each other. He knows more about the transplant process than the doctors originally assigned to me this time, so he told us a lot more than we knew from the meeting about the recommended treatment path. Unfortunately, that meant about an hour of bad news. Remember that train that ran over me when they told me they’d recommend a transplant? Well it came back and ran over me again. He told us that the ostrich method (where you bury your head in the sand and pretend none of this is happening, which is my mom’s preferred method at times) is not a good idea and then proceeded to tell us all of the risks involved. The transplant phase begins with a preparation week, which involves 4 days of high-dose chemo and 3 days of total body radiation. After that, they harvest (their word, not mine) my sister’s bone marrow and infuse it through my hickman. The goal of the pre-transplant week is to kill all of my bone marrow, so only my sister’s will be there. When the doctor mentions a “fatal dose of radiation,” it doesn’t matter how much your chest hurts or how many pain meds you’re on, you are wide awake. He continued to explain that if I received that much radiation from an atomic bomb for example, it would kill me, but those atomic bomb victims don’t receive new bone marrow. Either way, I’m sure you’re understanding my fear by this point. The radiation kills fast growing cells, like bone marrow, leukemia cells, digestive tract cells (all the way from the mouth to the intestines), and potentially egg cells. I’ll put the fertility adventure in a separate post so the guys out there can avoid it if they’d like. Then again, if you need a reminder of how lucky you are, it might be perfect for you. After radiation kills my mouth cells, I’ll have mouth sores and won’t want to eat. A few days later I’ll have throat sores too. IV nutrition is almost a definite, which upset me a lot at the time but now that I’m realizing the alternative is hospital food, maybe it’s not that bad. I’ll have plenty of opportunities for hospital food later, because I will remain in the hospital until my sister’s marrow begins to produce cells for me, a process that generally takes a few weeks. Once my counts are high enough, I can leave the hospital, but they don’t want me more than 20 minutes away for 100 days post-transplant, so about two and a half months after I’m discharged. My house is about 40 minutes away, and considering the transplant will probably be mid-November, this means I won’t be home for Thanksgiving, Christmas, New Year’s, or the birthdays of my mom, dad, and sister. I came home from college for all of those last year, so I can’t even say “I would have been away anyway.” After 100 days, I can go home, but there will be lots of limitations until 6 months post-transplant, and potentially up to a year. The tricky thing with transplants is balancing the Graft vs. Host Disease (GVHD) with the Graft vs. Leukemia effect. I will be on immune suppressing medication until my body and my sister’s cells learn to live together. Until they can get along, they could cause a lot of organ damage if not properly medicated. However, a little fighting is good, because just in case the pre-transplant week didn’t kill quite all of my leukemia cells, her cells will attack them. It’s a fine balance of killing the cancer and not my organs. This whole process terrifies me because of all the potential complications, some of which I’ve seen become reality for my friends. However, I know there are lots of healthy transplant patients walking around that I don’t even realize had transplants. If you or someone you know had a transplant, I’d love to hear more about the experience. I’ve talked to a few people but would love to talk to more. I’m sure there are lots of people at camp, but I don’t know who. That’s enough scary news for one day, though if I think of more later I can throw it in a future blog post. Back to this week, my nausea continued through the week but I could eat crackers. I started eating a normal dinner, and then eventually a normal lunch too, though I still eat graham crackers for breakfast every day. Part of the problem is that I used to always eat cereal, but I still don’t like milk. My go-to cereal was also cinnamon life. I like it even without milk, but it has a lot of folic acid which isn’t good with one of the medicines I get frequently. My port has a quarter-sized portal that is in my chest and has a tube that runs up to a vein. They used the same scar as last time which was much appreciated but my chest was so sore that I couldn’t use my left arm for much of anything. Changing positions from laying to sitting or sitting to standing was difficult and I couldn’t sleep on my sides for a few days. It was a rough week, but as the pain got better I only had the chemo side effects to deal with. This chemo makes my counts drop, as they all do, but to make sure they don’t get too low, I have to get a shot each day to stimulate white blood cell growth. My mom got a lesson in subcutaneous shots (and my sister was quizzed on how to spell subcutaneous, which she picked up very quickly). I can get the shots in my stomach or my arms, but I chose arms and we alternate every night. I had the option of doing them myself, but no thanks. I chose the title of this post because one of my friends texted me every day to ask how I was doing, and every day my answer was “better than yesterday” plus a little elaboration. One night he told me that at my current rate, I’d be running marathons in six months. It gave me a laugh, but it was even better when my mom read an article about a guy who actually did run a marathon 10 months after receiving a transplant. That made us feel a little better about the whole process. I’m sure that’s not the norm, but that’s fantastic. Things continued getting better each day through the weekend, though by that point I had acquired quite the armful of bracelets. One of my friends was in clinic on Friday and he knew where they keep the good cookies in clinic. I also had the opportunity to talk to another transplant patient, and although her experience was a bit different than mine will be, talking to someone about the whole process made me feel a lot better. This weekend, a few of my other friends were home for fall break, so I got to catch up with them too. It’s nice to have normal weekends with friends and family to break up the weeks full of chemo and clinic visits.
Thank you, as always, for the continued messages, cards, thoughts and prayers. The next few months are not going to be easy and they’re not going to be fun but I know there are so many people out there helping us all through this. I can’t imagine having better people in my life, I love you all! 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! I’ve been home for a week now and it has been fantastic, as usual. After a weekend filled with visitors, I returned to Hopkins on Monday for my last spinal tap and bone marrow of the induction phase. Versed knocked me out as always and I didn’t feel a thing, though I was a little sore from the bone marrow extraction during the week. Now we’re just waiting for results and I’m staying busy with classes and getting ready for my cousin’s wedding on Saturday. My ANC was over 900 on Monday so my doctor said I could get my nails done as long as the salon is clean and they’re not poking around at my cuticles. He may have said more, but this conversation happened after they gave me the Versed.
Classes are going well but are surprisingly hard to keep up with. I thought two classes would be no problem with all the free time I have, but I don’t have as much time as I expected. Between clinic appointments (where attempting to accomplish anything significant is actually pointless), naps, eating, running necessary errands, and hanging out with visitors, I don’t always have much free time. Working on The Triangle is much easier from home, which is nice. Other than that, I don’t have any updates about school, other than that I’ll be on campus a little bit over the weekend and I can’t wait! My boyfriend is coming to the wedding, and my parents agreed to drive him back to campus the next day so I can visit my friends there for a little bit. I’ve found some perks to this no hair thing. You know that awesome feeling of a cool pillow on your face? Well I have it for my whole head! Also, my showering time has been cut in half without a ton of hair that requires conditioner and legs that no longer require shaving. Instead of brushing my hair, I just need to pick a bandanna, or not (I usually do if for no other reason than my head is kinda cold). I have to enjoy the little things. These perks are not worth all the side effects, but they’re a nice distraction! As nice as not having hair can be, I decided I wanted the option of having hair, for things like the wedding and co-op interviews. I went with a family friend on Tuesday to find a wig. I was excited but also dreading the process. Usually when I’m shopping for something last minute (like less than a week before the wedding), I can never find what I’m really looking for. Fortunately for me, wig shopping was different! I stood there looking at a wall of hair in different colors and styles. It was overwhelming but cool to see how many choices I had. As much as I like a little adventure, I wasn’t feeling particularly adventurous about my hair so I stuck with shades of brown. When I considered a wig nine years ago, I found out they all had to have bangs to hide the part of the wig that the hair is attached to and I quickly stopped looking. My 10 year old self would rather be bald than have bangs. The only explanation I can think of is my traumatic experience growing my bangs out in 2nd/3rd grade, but since wigs don’t grow out, I really don’t have a clue. Anyway, wig technology has improved over the years. In addition to the dozens of wigs on the wall, there were dozens of catalogs filled with more options. I found one with slightly longer than shoulder-length hair and long side bangs that I really liked. Picking a color from a catalog is challenging. They have little hair swatches, but it’s hard to picture them as a full head of hair, just like using those paint swatches from Home Depot. They didn’t have the color I originally wanted in stock, but they suggested a similar color. When I picked it up the next day, it was a little redder than I expected but it looked great. Under certain lights, like the lights at the tailor where I went to pick up my bridesmaid dress right after I got my wig, it looks VERY red, but usually it’s dark brown with a hint of red. I wouldn’t complain if my hair grew back that color. Last time, my hair grew back darker, so maybe this time it will grow back redder. We’ll see! Wig and dress, check. My last project before the wedding is part of the bridesmaids’ gift for the bride. It requires going through a lot of old pictures, and I’ve been having a blast going through our family photo albums. Continued thanks for all of your thoughts, prayers, and visits! We find out the results of the bone marrow extraction and the recommended treatment plan this afternoon. |
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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