It’s been a long two weeks since my last update and I’ve got plenty to say about it (as usual), but first, a huge thank you to everyone who has contributed to my 100 day countdown so far! I still need at least 45 more so keep them coming! In case you missed my previous post, after transplant I’ll need to live in Baltimore for 100 days. Any infection is extremely serious during this time because of my baby immune system, so I need to be within 15 minutes of the hospital. These 100 days will not be fun – I’ll be feeling pretty awful – but having something to look forward to each day will help me get through them. My friends will be putting together a paper chain with one message for each day and I’m so excited to read them. I can’t say I’m looking forward to transplant, but I am looking forward to your messages! You guys and your love are such big motivators for me. Submit as many things as you want, and stay anonymous if you’d like (though I love hearing from people I barely know or haven’t seen in years, I promise it’s not weird!). Anyway, SUBMIT THINGS HERE! You have a little over a week to get things in so my friends can put it together before they move! Other than countdown submissions, I don’t need anything in particular right now but keep donating blood! I’ll be getting my fair share of transfusions in the upcoming months! Also, special shoutout to my Gamma Sig sisters who made not one but three Karen’s Crusaders teams for a volleyball tournament on campus to benefit the Leukemia & Lymphoma Society. I love and miss you guys so much and it was such an honor to have some of my favorite people playing my favorite sport under my name! As far as treatment, the past week has been one of the toughest I can remember of all of my treatments, which is saying something since this is number five… Right after my last update, I had my port placement surgery. July 1st is when all of the new fellows and residents start, but they were all in orientation so I didn’t need to worry about them doing my procedures. July 1st was also the day that Hopkins switched computer systems. This timing was a little more unfortunate. Everything took longer than usual because nobody really knew what they were doing, and it seemed like there was a red-polo-wearing Epic Support person for every nurse. My pre-op nurse was hilarious and my surgery was one of the first of the day, so luckily it wasn’t too delayed. When I met with each team (anesthesia, surgery, nursing, etc), I made sure they were all very aware of my severe Tegaderm allergy so I didn’t end up with any oozing welts on my chest or face. In previous surgeries, my eyes have been taped shut and they’ve used Tegaderm on my chest and both were quite unpleasant. I also noticed that the port placement consent said “port placement – right,” but I wanted it on the left in the same spot as my last two. They updated the form to say “port placement – right or left” which was not great but I talked to the surgeon directly and he agreed to try the left. That may be the last time he tries to use the same spot as a previous port because it was the most difficult port placement he’s ever done. Normally, when I wake up, I can barely move my left arm because it’s stiff from where the port is tunneled. This time, as I woke up I noticed my left arm wasn’t as stiff as usual, but then I noticed my right arm was stiff as well. I later found out that he tunneled it up the left as usual because it looked fine on the external ultrasound, but it turned out there was too much scar tissue for it to actually work. He tried the right side of my neck, but figured out it wasn’t going to work before he tunneled it. That didn’t surprise me because I’ve had a few lines in that side of my neck for the T-cell harvestings. The third spot he tried worked fine, so now the port itself is on the left side of my chest where I wanted it but it is tunneled over to a vein on the right, which explained why I was stiff on both sides. I moved from the recovery room up to the oncology floor, and I realized that the pain meds were only doing so much. My entire back and chest were unbelievably stiff from the 4+ incisions, way stiffer than during my tension headache a few weeks ago, so I asked for some muscle relaxer. Due to the new computer system, it took FIVE HOURS to get it. It also took a ridiculous amount of time for them to start my chemo, because the pharmacy was slow sending the special fluids I needed to adjust my body’s PH for the chemo. I kept trying to tell myself that other people had even more painful surgeries and they weren’t getting their meds either but it didn’t do much to ease our frustration. The muscle relaxer helped a lot once I got it. Friday wasn’t too bad otherwise. They’ve added tacos, quesadillas, and enchiladas to the menu, crab soup was the special of the day, and a family I know from camp brings dinner for the families on Fridays so I also got Chick-Fil-A. For some reason, after about 24 hours, they change all the pain meds to “as needed” instead of scheduled, but they don’t tell you that. After setting alarms so I wouldn’t miss my middle of the night doses, I eventually convinced them to keep the muscle relaxer scheduled because if I took it regularly, I didn’t need any pain meds. However, if I went too long without it, I needed both to get the pain back under control. After the 24-hour methotrexate infusion, I got lots of fluids and then leucovorin which helps counteract the methotrexate. The rest of the weekend wasn’t too exciting. I mostly slept from all the meds but eventually I could play cards. My best friend from Massachusetts, who I’ve been pen pals with since we moved in 1999 (though she is a much more reliable pen pal than I am…), happened to be in Baltimore for the weekend. She and her boyfriend came to visit, which was really nice, and they brought some delicious cupcakes too! Our 11th floor room had a pretty good view of some random fireworks shows throughout the weekend. They weren’t very close, but it was still fun to watch. I had a sinus issue before I went to the hospital, but I had kept it under control with allergy medicine and sudafed. Unfortunately, the doctors weren’t sure if the sudafed would react at all with the methotrexate, so they wouldn’t give me any. On Monday morning, they told me I could go home that day, and I could take some when I got home. My methotrexate level wasn’t quite as low as they usually wait for, but they know I’m good about meeting my fluid goals. They told me three liters and I said absolutely. However, getting discharged took forever because of the computer system and my headache got worse. It progressed to a migraine, and when I get migraines, I almost always throw up. Even though I got pretty close to my fluid goal, it wasn’t enough given all the fluid I lost. I also threw up not long after one of my doses of leucovorin, which may have made things worse. I ate some cereal high in folic acid to help make up for it. Oddly enough, I was in bed and started craving this cereal that I hadn’t eaten in years. It’s so weird how the body knows what it needs. I’ve had high-dose methotrexate before and don’t remember having many problems with it. This time was different. Throughout the week, I was expecting to feel better each day as my stiffness went away. I was even hoping to make it up to visit my uncle and get some stuff from my apartment at school, but no. The beginning of the week wasn’t terrible – I got a few mouth sores but they were just irritating at first because I don’t usually get them. I wasn’t eating much but I hung out with a few friends and kept thinking the next day would be a little better. Not so much. The sores appeared everywhere, including my throat. Eating was not worth the pain. I could barely open my mouth, it hurt to swallow, and some of the sores were bleeding and eventually turned black. Chemo attacks fast-growing cells, like my entire GI tract, so the symptoms worked their way down and I started getting terrible stomach cramps. By Friday, I had to numb my throat and mouth with popsicles or ice cream for breakfast to even consider taking a pill. I quickly realized that eating, drinking, and taking pills were just not happening (or would come back up in a bloody mess), which meant no pain or nausea meds. I basically spent the week in my room with a heating pad. I cried at least once a day because I felt so helpless and defeated. When I was in clinic on Friday for my bone marrow test, I got some fluids and they also sent some for us to do at home. I was worried they would make me stay inpatient but they’ve seen mucositis before and know it just needs to run its course. Saturday was even worse, but by Sunday there was slight improvement. It was a beautiful day so my dad got an extension cord so I could sit outside with my heating pad. We watched the bluebirds feeding their babies in the nest outside our house. It was also fun to watch the Olympic trials later that night, and I’m excited to have the Olympics as entertainment when I’m inpatient for transplant. Monday was my birthday and I finally felt a little bit better. I stayed on IV fluids, but I managed to eat spaghetti. I had three plates of it (about 5 bites per plate, but the fact that I was hungry enough to go back for more was really exciting)! Two of my friends had offered to hang out over the weekend, but I could barely talk so I said no. I didn’t have a choice about my birthday though – they were coming over. They brought ice cream cake, so of course I ate a little sliver of that too. I really don’t think I’ve ever had such a tiny piece of ice cream cake, but that day, it was an accomplishment. I clipped my birthday balloon on to my IV pole and we had a really nice night. It certainly wasn’t the birthday I had been planning in Philly and I didn’t get a slurpee, but it was exactly what I needed that day. Thank you all so much for the texts, messages, birthday posts, voicemails, singing over facetime, cat photos, and other birthday love! After such a rough week, it was so nice to have a day filled with so much love and happiness. Especially after such a long week, I was really hoping for some good bone marrow results. The good news is that these two weeks of chemo reduced my disease level; the bad news is that there is still a little bit which isn’t the zero we need for transplant. The plan moving forward involves repeating the last two weeks (without the surgery and hopefully without quite as much mucositis) and adding one other maintenance chemo drug. I’m not thrilled at the idea of more methotrexate, but I know they’re choosing this path because it has fewer long-term side effects than some of the other options, even if the short term won’t be fun. The delay is frustrating because I’m SO CLOSE and I just want to get this over with (and start reading my countdown messages)! I also know any chemo I get now is weakening me for transplant and the longer it’s delayed, the less likely I am to go back to school for winter term. Yes, it’s sort of silly to worry about that right now but I need something to look forward to. I made the very difficult decision to drop my summer classes. BS/MS requires a minimum of two undergrad and one grad class per term. I could probably get an exception, but after staying up late two nights to finish work when I felt miserable, I decided it was probably best to remove that extra stress. I have plenty of books I can read or shows people have suggested I watch that I’ve never gotten around to. Plus, my doctor said I need a new hobby (besides getting sick), so I guess this is my chance to pick one up. My sister has been so crafty lately so maybe I can follow her lead. I was particularly upset about dropping classes because now I don’t think there is any chance I can graduate on time. I know, I’m getting two degrees and had leukemia four times during college, there’s nothing wrong with not graduating on time… but I was so close and have worked so hard to stay on track that it’s really frustrating. There hasn’t been a final decision made in terms of my bone marrow donor, but it sounds like they’re leaning toward my brother. He’s a half match, so I think they’re hoping I’d have a little more of a reaction to his marrow than Susie’s since she is a full match and I didn’t react last time. His high school superlative was most likely to cure cancer, so I’m hopeful that he can cure mine once and for all, no med school required! (And you could join the bone marrow registry and do the same for someone else!) Chemo starts again tomorrow, and I’m finally starting PT again as well. Here’s hoping for an uneventful week! As much as I try to stay strong and stay positive, it really, really, really sucks to be doing this AGAIN. It’s emotionally draining. Of course I knew it was a possibility I’d be here again, but it was so nice to be a normal college student for a few months. I’ve always loved summer because half of my friends have July birthdays and there are usually some fun vacations mixed in too. It’s disappointing not to go on vacation, but it’s really more upsetting that I keep missing my friends’ birthday celebrations. I’ve been celebrating with some of them since we were in kindergarten and they’ve done so much for me through the years. I hate not being there to celebrate them. When all this is over, we are going to need to throw the biggest thank-you party ever.
2 Comments
Deanna Keppley
7/15/2016 04:42:27 pm
Karen -- you do such a marvelous job describing your horrendous situation. I really wish there would be some way we could help, but know for sure we are keeping you in our thoughts and prayers. Our hearts go out to you. And when you're feeling strong enough, keep those games coming too. I love keeping in touch that way. Keeps our minds off the nasty stuff!
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Irma Chazotte
7/15/2016 11:52:30 pm
Glad you're feeling strong enough to post your blog. It gives us insight into what you're going through. Thinking of you on this challenging journey. Wishing you the best and lots of love.
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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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