The practical information: I had a CT scan on Friday followed by a doc appointment with my oncologist. Scans were good, so I got the official all clear that I'm finished treatment and can get my port removed! I don't have to go back to the oncologist until March! But the doc did say that they found a "bone change" in my T1 in my spine. She emphasized that it was not cancer related and that they went back to look at my previous CTs and the changes were also present in those scans. She said she just "wanted me to know" in case I ever had back issues. I told her that I've had a lot of back issues -- mainly herniated discs. She didn't seem to think it was related. After she told me not to worry, I added it to the top of my list of "Things to Worry about Post-Cancer." Back to the port. After several calls with scheduling people at CHOP, I've learned that I can't get my port removed at CHOP because I'm not a child. Funny how this whole being-an-adult thing is only just becoming an issue now. But my doc is working on getting me scheduled for a port removal at HUP right next to CHOP. I'm antsy to get old port-a-pot out ASAP because as soon as that happens, I can switch to oral blood thinners for my blood clot. And boy oh boy am I looking forward to not sticking myself with a needle twice a day, everyday! I'm running out of places to stick myself, my stomach and arms are so covered with bruises. Anywho, it's coming out soon, hopefully! Next on the to-do list is a cardiology apt, echo, and EKG on Thursday to make sure my heart didn't suffer too badly from the poisonous chemo and to check up on my blood clot. (P.S. forgot to mention that they did my post-chemo Pulmonary Function Test, and my lungs are doing just fine, although most people probably beg to differ if they ever saw me attempt any sort of cardio workout.) Then Tuesday, I meet with a hematologist. I think that's also because of my blood clot. But to be honest, I'm not really sure. Docs, nurses, and schedulers call me and tell me I need to see them or I need this test or that test and I just write it down in my planner. The doc appointments aren't slowing down quite yet, so I'm glad I'm not back at school. But I am SO thankful to be finished treatments. Thinking of all my Gtowners as they start classes today! The random anecdotes about my life: Grandma and I made cookies yesterday. While they were baking, we compare pill boxes. (Mine's all gold and shiny with daily, rainbow-colored boxes inside -- thanks, Becky!) Let's just say, as a 24 year old who went through chemo and is living with her parents, I'm becoming very good at socializing with people outside of my age group. Because...well...I recently suffered from a lot of "old people" problems. This older gentleman at the Y approaches me after a Body Pump class and asked if I'm going through chemo. Hmmm...I wonder why he asks that... I happily tell him I just finished. As I put away my weights, he tells me I'm "much too young to have to worry about that sort of thing." Instead of being the kind,respectful youngin' that I once was and saying something along the lines of, "Oh, it's alright...'Tis life I suppose," I blurt out, "YOU'RE TELLING ME!" He's lucky I didn't add a F***ING HELL to the end of that, as curse words have become a much more common part of my vocabulary than they once had. And here I thought I was in the clear from even having a potty mouth after surviving middle school with not much more than a damn or two. Oh well. I guess cancer will do that to you.
I got very sick just before the new year with a stomach bug of some sort. I was up all night vomiting. Then at 4am when I woke up the whole house with my hurling, my mom called the hospital to ask what to do. They told me they couldn't do a lot and to just "ride it out." So I got off the phone as quickly as possible (somehow I ended up with the phone even though my mom was the one who called -- not sure how that happened) and returned to the bathroom where I belonged. The next day, several nurses called to check up on me. I know they were just doing their jobs, but I let all their calls go to voicemail. I figured if I could "ride it out" and wait, so could they. (I've turned into a resentful SOB, haven't I?! There really was nothing they could do. Not to mention, I was in no condition to be getting in the car and riding even 15 minutes to the nearest hospital.) During my last appointment, my doc made a snarky comment about how I probably picked up the bug while going to the gym with a weakened immune system seeing that I didn't personally know anyone who was sick. She's warned me before about working out too soon and too much. Well played, doc. Well played. Needless to say, my NYE celebrations were delayed. I held off on the champagne for another night. (I like to think of that stomach bug coming right at the end of the year as 2018's way of squeezing in just one last kick in the groin.) So if anyone's looking to celebrate the arrival of 2019 again, I'm your girl.
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So I was reading (and admiring) Mary's blog. It actually makes me feel kinda dumb. Because she uses all these big words I don't understand, like snafu and ambivalent. I feel ok about not knowing what snafu means. But ambivalent? That's a word I've heard many times before and never took the time to look up. In case you were wondering, it's an adjective basically meaning unsure. That probably makes me look really dumb. I could use the excuse that I speak Spanish. And they say that when you're measuring learning progress in bilingual children, you're supposed to count all of the words they know in both languages because if you only count the words they know in one language, you're getting only half the picture. Which is why bilingual children are thought of as having learning difficulties when they are actually being improperly assessed. But here's the thing. I wasn't brought up bilingual. I learned Spanish later. So I should have a completely functional, adult, English vocabulary. You know what I think the problem is? I didn't play enough video games growing up. My friend Jack has a great vocabulary. When I asked him how he knew all these fancy words, he didn't say, "because I read a lot." He said, "because I played a lot of video games." And I was like, "you mean you read what all the characters were saying to understand the story of the games you played??" I remember watching my brother play Zelda and he would just click through those little quote bubbles as quickly as possible so he could get back to playing the game. Apparently, game developers have great vocabularies too. And they're good at programming. That's a little too much talent for one person if you ask me. What I'm trying to say is, if you want to read intelligent, thoughtful blog posts with big words, read Mary's blog. If you want to read the thoughts of a 24 year old with a 9 year old's brain, read Emma's blog. Actually, you should just read both either way. It's not her fault she's so smart. Ok, you're probably like, "alright Emma...why are you not giving me cancer updates?" Well that's because this blog/website thingy was much more than just cancer before September 2018. It involved a lot of weird and random thoughts/happenings in my life. So I'm trying to bring that back a little bit. Chemo went smoothly on Wednesday. My mom and Lanie came with me. We hung out and played cards. While I was getting infused, (that sounds so weird: infused -- like I'm a scented candle or something) this lady from Child Life stopped by my chair. She hung this big poster on the wall, congratulated me for finishing chemo, and gave me a gift card to Target. Super nice! It feels so weird to be congratulated for finishing treatment. It's not like I set a goal and achieved it. Don't get me wrong. It was freaking hard. But congrats sounds so weird. Like my mom always said when people asked if I was ok with everything happening, I didn't have much of a choice. But if you wanna give me gifts and congratulate me for doing something I had no option but to do, I'm not gonna argue! Thank you, kind lady! Wednesday evening got a little shaky. I had a slight fever and was worried I was going to have to go back into the hospital. Luckily, it never went over 100.4 when I'd have to possibly go to the ER because they worry about infection when you have a central line. You go, white blood cells! While I was getting infused, one of my nurses who had treated me before said, "This is your last chemo?! That was fast! Did it feel fast?" Never have I answered a question so quickly in my life. I know I was extremely lucky to not have to go through radiation and that my diagnosis was very good considering. But no. I can't say the past few months have flown by. I know what she meant though. Like I said, I was lucky. My treatment was really fast. Plus, I transferred to CHOP after already starting treatment at Georgetown, so I was at CHOP for an even shorter amount of time. My doc also keeps telling me how well I handled treatments. She says most people can't workout on this chemo regimen. First of all, I'm not most people. I'm an extra special ray of sunshine. Did nobody tell you? Second of all...I don't have a second of all. At least my doc adds, "I know it probably doesn't feel like it," when she tells me how well I handle chemo. All I got say is:
I'M FINISHEDDDDDD!!!!!! WOOOOOOOO!!!!!!!!!!!!!!!!!! P.S. I've been attempting Body Pump classes at the Y. Because they're fun, and I miss exercise. When Instructor Suzie saw me in class today, she played one of my fav songs to work out to: Peanut Butter Jelly. I know. Thrilling information that you really wanted to know. I'm just trying to ease my readership back into less exciting life events now that I'm DONE TREATMENT!!!! P.P.S. Got a fancy, new phone for Christmas. Thanks, Mom and Dad. It has a fancy, new camera. Please, enjoy my extra special photography skillz. I definitely write the most when I need to vent about something. So consider my absence a good sign. I was supposed to be admitted for treatment last Friday through Sunday. My doc called Thursday evening explaining that the hospital was full they were going to have to delay treatment. CHOP has a tendency of filling up during the winter months when respiratory issues are aggravated. Since I am a non-emergency patient (I mean, they were debating if they were even going to give me this last round of chemo), they bumped me and 9 other patients were were due for treatment. I was not-so secretly pleased because not being admitted meant I got to go to my friend's holiday party and play this weird candy cane game. Please enjoy this high quality video of Mike and I fighting to pick up candy canes with other candy canes. My dad and I still headed to CHOP for my check-up and blood work on Friday just to make sure I was set to start treatment later that weekend. I was slightly concerned because delaying this cycle meant I would feel crappy for Christmas Eve and Christmas. Food is a very important part of the holidays in the Tierney household. Isn't that what Christmas is all about?? And stuffing my face with nommy food is always very high on my to do list (even if it's not the holiday season). But no worries because I was allowed to delay my next outpatient treatment until Boxing Day! I was very good about my nausea meds all this week, there were no hiccups, and I just finished several rounds of Christmas Eve dinner followed by 2 large servings of chocolate mousse. (Lanie and I claimed the extra dessert since wine wasn't an option for either of us.) Anywho...during my appointment my doc was chatting with my about my plans once I'm finished treatment. (Exciting! I know!!) I told her I was looking forward to rowing again and had signed up for a Livestrong class at the Y to help me get my feet on the ground again. She cautioned to not to get too frustrated and that I probably wouldn't feel like myself again for several more months. Sorry doc, but I can promise you now that the frustration will happen. Then she told me to be careful because the steroid that I'm on can cause muscle weakness. What? I'm confused. That's not how a steroid works. Is it?
On Sunday, I was admitted for treatment. No vomiting this time. Phew! One of my nurses even made me a card celebrating my last inpatient treatment. Tuesday I was discharged. Right on schedule, Wednesday night there were some tears. Get this. Reasons there were tears: 1. Because I couldn't stand my dad watching another minute of the news. (Especially that stupid MSNBC show that's like the liberal version of Fox and Friends. One is not better than the other. They both just tell their viewers what they want to hear.) 2. Because it was 6:15pm and I was in bed ready to sleep. And the thought of having to stay up all the way until 8pm for my next dose of meds and then having to wake up again at midnight for another dose was just too much to bear. So mommy sat in bed and read while I shut my eyes for a bit and wallowed. All better. But honestly, this week has been phenomenal. The extra recovery time between treatments has given me more energy. I got to workout at the Y a couple times with my neighbor Bethany. Lanie took me on a walk. I baked bread. I went shopping. I made gingerbread cookies. I lunched with friends I hadn't seen in AGES. I even did handstands! The last time I did that was before I got my lymph node removed from my neck right before I was diagnosed. Christmas is tomorrow, and I'm looking forward to stuffing my face some more before my LAST TREATMENT on Wednesday! Merry Christmas, ya filthy animals! I got more scans done Friday. I'm going to try to explain what the doc said, but this time I don't have pictures to go along with the explanations. As a matter of fact she didn't even show me the PET or CT scans. So when I was diagnosed, Dr. T in Gtown chose a chemo regimen involving a 6 drug cocktail. He chose this regimen over a 4 drug regimen because he read a study done by a doc in Minnesota that found that patients with my flavor of Hodgkin's Lymphoma were more likely to relapse later in life if given the regimen with fewer drugs. The other 3 flavors of Hodgkin's did just as well. When I switched the CHOP they kept me on the same 6 drug regimen and continued my treatment plan as I had started it in Gtown. However, Dr. K who is treating me at CHOP informed me that this 6 drug regimen is typically used for patients with intermediate risk Hodgkin's lymphoma. Dr. K said that normally she can tell a patient right away how much treatment they're going to need when they're diagnosed. For an intermediate risk patient with my type of Hodgkin's that would be 4 rounds of chemo plus radiation. However, radiation can be skipped if the patient meets certain benchmarks during their chemo treatment. These benchmarks are a 65% reduction in tumors after the 2nd chemo and an 80% reduction after the 4th chemo. These numbers and the rounds of treatment are determined by research and scientific studies that have been done. My understanding is that after there's an 80% reduction, the tumor just start to scar away. Then scans are done every 3 months for a year to make sure that everything is indeed resolved. However, I don't have intermediate risk Hodgkin's; I have low risk Hodgkin's. Which is a good thing. Since mine's low risk, Dr. T in Gtown initially proposed 3-4 rounds of chemo and maybe or maybe not radiation. Dr. K at CHOP explained that if a person with intermediate risk needs 4 rounds and maybe radiation, then some doctor's would extrapolate out from research studies and say that a person with low risk probably only need 3 rounds and maybe radiation. However, there are no studies to determine if 3 rounds is enough or if 4 rounds is better. Plus she has never given just 3 rounds of chemo. Ever. And this lady is like the leader for treatment of lymphoma at one of the best children's hospitals in the country. So while she left the decision up to me on whether I should or should not have a 4th round of chemo, she said she felt uncomfortable only giving me 3 rounds. She said it was simply a "feeling" and not based on any studies or anything. But then again, there aren't any studies. And I didn't want to short change my treatment. My scans indicated a 78% reduction in tumors after the 3rd round of chemo. Just 2% away from the 80% benchmark for no radiation. But that damn 2%...you just never know. And I'd be skipping the last treatment AND not getting radiation. If I were to skip my last round of chemo and the tumors weren't still headed in the right direction when I redo my scans 3 months after treatment ends, they couldn't just shoot me up with another round of chemo. Dr. K said at that point, the cancer would be "back" and they'd have to create a new treatment plan and start me on a different regimen. And I really DO NOT want to do this all again 3 months from now. I'd rather just do it all now. I really, REALLY do not want to do this again. While Dr. K can't guarantee I won't have a relapse, she doesn't think that will happen. This last doc appointment made me realize how medicine really ins't an exact science. My mom and dad walked out of the appointment celebrating because we did indeed receive a lot of good news. However, I just started crying because I felt like I had just written away the next 3 weeks of my life. All I could think about was how I have to feel like crap for another 3 weeks. I have to get my port accessed 2 more times. I'm going to miss my friend Olivia's Christmas party. I might feel like crap on Christmas. But woe is me. It is only 3 more weeks. I cried. I'm better now. Let's get this done. Also, I didn't mention Coach Jason and Stephen in my last post. They both taught me patience in that you train and reep the results later. And by taught me patience, I mean that they made me realize that I don't have any. I wanna be fast now. I wanna be cancer free now. But at least I'm aware of that fault. The only reason I didn't mention them is because they made me love rowing. And I can't do that right now. So boo hoo me, they get a thank you when I'm back in a boat. :P But right now, I'm not going to not be the bigger person and just be mad at them that they made me like a sport I can't do right now.
Some salt in this post but much less than the last.
Things I've learned from coaches that can be applied to cancer: Lesson 1; Take ownership. As Coach Reilly and Coach Marci always said "own the role in your own success." If something seems wrong, it's probably wrong. Like really wrong. And keep bringing it up until somebody listens to you. Why do I mention this? Remember how the docs found a blood clot on my last scan and how I had an unexpected slumber party at the hospital? Well, turns out they sent me home taking 1/100th of the blood thinner dose that they had been administering in the hospital. Sometimes I think they don't take me seriously when I bring up a concern because I'm not as sick compared to a lot of the other kids here. But the truth is, I know when something's wrong. Guess I need to start being a bit more of a bitch about things because clearly I know best. I mean I brought up the blood thinner dose seeming wrong several times to the nurse while I was inpatient. She double checked with another nurse who also said it was fine. Then, I brought it up to the doc a week later who also said it was fine. Finally, I brought in the bottle of medicine and syringes I'd been given, and they FINALLY listened. My dose was 100x off! And that passed 3-4 checks: the pharmacy, 2 nurses, and the doc. So they hospitalized me for a blood clot and then essentially took me off of the med that made it ok for me to go home. When I asked if they wanted to push up my next echo (ya know...since I haven't been taking the blood thinner), they said no. Confused and frustrated. The whole time I was talking to nurses and doctors trying to sort out this big mistake, I was trying my absolute best to channel my inner Katie G from OKC, aka the best communicator you'll ever encounter. Just kept saying in my head "Use your words, Emma. What would Katie do," and not just lose it on everyone and cry. Just glad I was undercutting the dose and not overdoing it. Lesson 2: Body function is way more important than weight. This one I got from coaches Donna and Glenda. I now fluctuate around 150 pounds. I was probably a solid 40 splits faster on the erg when I weighed 160 before getting diagnosed. And I can barely do 1 pull up now. Even though my body has been annoying the crap out of me lately, I think human bodies are pretty amazing things. Think about all the crazy things people can do. They can flip and run really freaking fast and jump really high. But that's the key: to be impressed by their function more than their appearance. Donna and Glenda always encouraged their gymnasts to be impressed by what their bodies could do for them. (Something you'd think would be commonplace among coaches but definitely isn't in the gymnastics world. They wanted to raise strong, young women. Not weak, broken, little girls. Love the Y. <3 Long overdue thanks for the box of fun cards and drawings from the current Gymcat gymnastics team! Some of these girls who sent me cards I coached YEARS ago, and it's so nice to see they're still involved in the sport. And at a place as awesome as the Y.) It's a lesson I constantly need to remind myself of these days. I try to remind myself how impressive it is that my body is responding so well to treatments and has been able to bounce back from treatments relatively easily. This past weekend I got to go to breakfast with my sister, my mom, and my mom's running friend who has had and beaten cancer twice. It was really nice to exchange stories with her (over some delicious pancakes I might add). She told me she not once had a treatment on time due to her white blood cell count always being low. I've been so fortunate that my body has been healthy enough for every treatment to be on schedule so far. Counting my blessings and thanking my body. Lesson 3: Working out is good medicine. (Which is super hard to do when you're getting chemo. But I try sometimes, and it does help.) My first gym coaches fostered my love for working out and being active. All of them, Karen, Jamie, Caitlin, Ashley, Jen, made me LOVE gymnastics. Like an almost unhealthy amount, especially for my ability level. But they also had this weird ability to motivate me athletically, not just in gymnastics. Conditioning was my jam. I could crank out push ups and sit ups and laps around the track like it was nobody's business. And what's more is I freaking loved it. Jamie especially motivated me to be stronger. She just made it all fun! I mean, who likes that stuff?! And who is capable of making people like that stuff?! I guess I'm just trying to say thanks. If I'm lucky, I feel capable of working out about one every week/once every other week. A big change from my 2 day workouts. But it certainly has made me appreciate when I can get outside for a short jog. It's like this nice "keep Emma sane" happy place that all of them created for me when I was younger and am appreciating now. Especially now. Lesson 4: Make a plan. My XC coach from high school (who I ran for every summer but only actually followed through on 1 season), Lac, taught me to plan. He would give us calendars with all of our workouts for the entire summer and all the way through the season. It really taught me how one workout builds on another. But he also wasn't afraid to adjust the plan if something changed. Which is something that you have to do a lot when you have cancer. Lac also taught me to push myself...but we are gonna kinda ignore that right now since that's not something I'm supposed to be doing much of. I think I'll appreciate that lesson later when I'm really frustrated that my body isn't working like it did pre-cancer diagnosis. He's the only coach I've ever vomited during a workout for. I guess that's kinda weird. Saying i vomited "for" him. Vomiting isn't a good thing. But I think it illustrates well how he taught me to push my limits. Hopefully, that's something I'll be able to get used to doing again soon. Really soon. Stressor: One of my biggest anxieties is my return to rowing. I practically begged the coach to let me row for Potomac. Then the High Performance team got a new coach and I got diagnosed right around the same time. The new coach didn't even get to see me row. I'm inexperienced and not fast. Yet. So now I'm worried about how I'll get back in a boat. I know I will, it's just the plan and the path that are stressing me out. I can just hear my friend Olivia say "that's not something you should be worrying about right now!" But you know what...it's important to me. So until I'm back training, I'll be over here worrying about it. I know it'll be really, REALLY hard. And I know there will probably be many tears of frustration but it'll happen. Whatever the path ends up being. In the meantime, I'll just be here thinking about all the wonderful coaches I've had in my life and how they've helped me get through some pretty tough workouts but are also helping me get through these challenging few months. Whether they know it or not. So thanks. Rated PG-13 for excessive cursing. I would say I'm sorry, but I'm not. I'm just not. I had a rough weekend. I was inpatient for chemo again. The doc had actually said I could push my treatment back to Monday and have it done outpatient, but I was just talking to my mom, and we are really glad I didn't. Because I probably would've ended up having to be admitted anyways. I vomited Friday night from the chemo, and to be honest, I don't really remember too much of the rest of the weekend. They really must've loaded me up on nausea meds after that. I do remember feeling really sorry for the poor nurse who had to clean up my vom though. I made it to the toilet, but I puked in the pee collection thingy that sits in the toilet too. Oops. Please enjoy this rare sighting of my father playing cards with me. That's when you know he feels bad for me. And this selfie I don't remember taking, featuring one of MANY hats my ever-so-generous and talented friend Emily made for me. Now for the real salt. Let me preface this next part by saying I have absolutely LOVED all of my nurses. Seriously. Like I want them all to be my friends and hang out with me. I wouldn't turn down any marriage proposals from any of them either. And I'd probably take a bullet for most of them. Like I said: love. At Gtown and CHOP, they've all been amazing. And I could never do what they do. Nurses are superheros, and more often than not, I trust their opinions over those of doctors because they are on the font lines and know what actually works and what doesn't. They're awesome.
Now that I cleared that up, let me tell you about this bitch of a nurse I had in the clinic on Friday. And I don't curse lightly. (Although I will admit, it has become much more acceptable to curse in the Tierney household post-cancer diagnosis than it was pre-cancer diagnosis.) Friday morning, I'm suppose to see a different doctor, and therefore nurse, because my doc is out. Nurse Poopy Face brings me back to access my port after a nurse tech has taken my vitals. I tell her I forgot the tube of numbing cream that they normally use before they access my port. While I fully admit it's my fault that I forgot the tube of cream, I was also never required to bring my own cream when I was being treated at Gtown. They always just put it on when I got to the clinic. So. Instead of being like "oh, sweety, lemme get you some of that," this BITCH was like, "We can try it without it this time. Lots of people don't use it." LOTS OF PEOPLE DON'T USE IT?!?! ARE YOU FUCKING KIDDING ME?!?!? Excuuuuuuussseeee me, but have YOU ever gotten YOUR port accessed?!?! Those needles are like 1,534,868,751,354,35,5,867 the thickness of regular shot needles. Not to mention I'm already injecting myself gazillions of times a day with other various needles. I could've slapped her. But what did I do instead? I cried. Obvi. Because it hurt like the bitch she is. (Savage. I know. Just bear with me. I have cancer.) She walked me to another room where I'd see the nurse practitioner and doc. Which is when she noticed my tears. She asked if everything was alright. Obviously not, Ms. Poop Face I Hate You. I said I was "fine" with a heavy dose of go-the-fuck-away in my voice. I hope she never EVER does that to another patient. It's one thing if something's going to hurt. It's another thing if something's going to hurt and something can be done to make it not hurt as much. Or even not at all. But then my dad gave me a hug, and when the nurse practitioner walked in, she told me she was sorry and that this all must "blow chunks." And that helped a bit. This week just has not gone according to plan. It's supposed to be my off week during my treatment cycle, aka the week I don't have to go into the hospital. I had to go to the ER last weekend when I got sick, and this past Friday I was admitted again because they found a blood clot during my PET scan. Mood: lightly salted. The doc initially told me I'd be in there until Monday or Tuesday. Thank goodness they found the correct dose of blood thinner quickly, and I was released Saturday. Apparently blot clots are pretty common for people who get ports inserted. When you get a cut, your blood clots to stop you bleeding. When you get a port inserted, it's this weird, plastic, foreign object in your body that shouldn't be there, so your body reacts like it needs to be healed and blood starts clotting to help. That's what happened to me. My friend Mary (the one with the blog) said the same thing happened to her with her picc line. So now I get to give myself shots everyday, twice a day until I'm done treatment and get my port removed. They said they need to be injections and can't give me a pill because if my red blood cell levels drop, I need to be able to stop the drugs immediately. Pills stay in your system for longer. But once I'm finished with the port, they will switch me to a pill until I'm no longer at risk of a blood clot. My friend Olivia was keeping me company in the hospital and ended up driving me home and hanging out for a bit. It sucks being in the hospital when your sick, but at least it makes sense. Being in the hospital when you feel 100% fine just drives you batty! But I do have to be thankful that they found the clot on a routine scan and not because it dislodged and started causing problems. Feel sorry for Lanie because she came straight to the hospital to slumber party it up in the hospital instead of going home to start off her Thanksgiving break. But so thankful for, not just my awesome friends, but my sister's. Shout out to her roomie and teammate Gabby who came to keep the both of us entertained. Because that's what she does best. Plus, she brought lots of awesome snacks! To summarize, let's make a bad news sandwich. The bread: Slice 1 - The cancer has shrunk a lot Slice 2 - My blood clot hasn't caused any problems. The filling: I have a blood clot in my right atrium (don't quote me on the location...I just know it's in my heart, and I'm pretty sure that's what the doc said). Let me try to explain my PET scans in the most technical terms possible: The left shows my most recent scan, and the right shows my first scan from before I had any chemo. The middle white thingy is my heart. On the right, you can see lots of white bubbly things around it. That's cancer. Now see how there aren't white bubbly things on the left! Yay! On the right, you see lots more white bubbly things. Those are cancerous lymph nodes. On the left, they've shrunk to what my doc said are "normal size." This is the same cross section of my chest but in heat map form. The bright yellow things on the right are...you guessed it...CANCER! And on the left, no yellow thingies! Same deal with the yellow but on my neck. And last, but not least...here is my full body scan. The black spots in my neck and chest on the right are cancer. On the left, they're gone! The doc did say that this weird spot under my armpit showed up on this most recent scan. She said that we will keep an eye on it, but it is probably just my lymph nodes reacting to a cut on my hand or something along those lines. What are the other black thingies you ask? I have no effing clue. The top is my brain. No, I don't think my brain is full of cancer. They use a radioactive tracer when you get these scans to indicated where the cancer is, which I know from my very thorough research is affected by sugar. My hypothesis is that your brain uses a lot of sugar, and that's why it lights up like that. As for my stomach, I like eating sugar, so that explains that. But once again, I actually have no clue. The black things in my arms, you ask? No idea. As for the bottom of the photo, my friend Olivia thinks it's my poop. I can't say I disagree with her assessment. I was hesitant to share these scans because I was worried people would input their very professional medical opinions and ask "what's this?" (answer: I have no freaking clue) and "it looks like you're cancer free" (answer: mmmm...probs not, try again). Right now, the doc is saying 1 or 2 more rounds of chemo still and refuses to give me any indication of whether I need radiation. Believe me, I bugged her a lot asking over and over again. Also keep in mind that these are wonderfully professional photos of the actual scans. And by that I mean I took screen shots of these pics my doc sent me. So long story short, I have no clue how much cancer is still there. But if you ask me, the second scan looks a lot better than the first! So I'll take it!
Anywho...Friday night I slept A LOT and woke up Saturday feeling less great. I went to the Reel Rock 13 film festival in Philly with Reggie Mac anyways because she's outdoorsy and awesome, and I like to piggyback off of that. I wasn't feeling too hot, but I was functional. I headed over to Lanie's apartment near Temple to spend the night (*pardon the interruption for a big sis bragging moment* who PR'ed on her 30 min test at the Princeton ID camp earlier that day). The next morning, I was very much not functional. Lanie called my mom who sent my dad to come meet me in Philly as I headed over to the hospital. I arrived in tears partially keeled over from stomach pain. My dad spend the next several hours waiting by my bed as the docs and nurses handed me meds trying to get my nausea under control in between bouts of vomiting and diarrhea. Thanks daddy-o. Just a couple hours ago I was able to eat some soup. It's my mom's birthday, and I would love more than anything to be able to eat some birthday cake to celebrate with her. That'll just have to be put on hold for a little while. Needless to say, it's been a rough couple days.
A funny anecdote: So there's this security guard that you have to check in with before you enter the parking garage at CHOP. There's a big sign posted to make sure cars stop to talk to the guard before entering the garage. We roll up for treatment on Friday and before my dad even gets the chance to put the brakes on all the way, the guard takes one look at my bald head and just yells "YOU'RE GOOD!" while waving us on. Dad laughed so hard. Political thoughts for the shower: Since converting to the bald life, I've become scared of being called transgender. Why is that a fear of mine? Well because I have eyebrows and no hair and could very easily be mistaken for a man. Or someone with female parts that identifies as a man. Because I look like a man. Whatever that means. Because I still have my eyebrows, people might think it's a choice that my head is shaved, especially with my clothing style which Lanie has previously described as obsolete middle school boy. I have to point out that this is definitely more of a fear of mine because of the political climate we live in. I can't imagine living with that kind of fear everyday of my life just existing and being myself. So I came up with a response if someone is a turd and decides to say something rude: 1. My pronouns are she and her. It's so nice of you to ask. 2. My genitalia are none of your business. 3. I have cancer. Look who's the asshole now. Just to clarify. This is not your cue to console me and reassure me that I still look like a woman even though I'm bald. However, this is your cue to treat all your fellow human beings with love and respect. Another blog you should be reading: I'd like to take a moment to direct you to a super awesome blog that one of my dear neighbors and childhood friends has started. She's incredibly cool, and as my mom put it, "she probably saw your blog and thought I can do better than that". Which is almost certainly true. Mary is a super talented writer who suffered a spinal cord injury a little over a year ago and has taught me to say "you, go f*ck yourself" (in our heads, of course) to people who stare at our respective wheelchair and bald head. She also taught me to should use your health problems to your advantage. She convinced her mom to get her a puppy because she had a stroke. I'm still working on my mom... She texted me the most hilarious thing when she found out about my diagnosis: "Maybe this neighborhood is cursed." I just about died of laughter. Anyways, you need to read her blog because: (1) She's a much better writer than me. (2) She has her own domain which is legit. None of this .weebly.com crap. (3) She probably proofreads her work, unlike yours truly. The end. I know it's been awhile. I just got out of my second inpatient treatment and my first treatment at CHOP yesterday. Love my new doc! She is super sweet. Just a refresher on my how my treatment works: Each treatment round is 21 days long (or 3 weeks for those of you who struggle with math). My Day 1 is always a Friday. Week 1: I am admitted into the hospital for 3 days of treatment receiving 6 chemo drugs on the first day, 2 on the second day, and 1 on the third day. Week 2: I am treated outpatient in the clinic and receive 2 chemo drugs. Week 3: No hospital visits assuming everything is going well to allow for my body to recover before starting another treatment round. Summary: I get chemo drugs on Day 1 (Friday), Day 2 (Saturday), Day 3 (Sunday), and 8 (the following Friday) with injections and other drugs self-administered at home sprinkled in between. We arrived around 9:15am to the hospital to check-in after a slight mishap getting a waffle breakfast sandwich from Wawa instead of a bagel. Advice: don't ever go with the waffle. Ew. CHOP is super massive compared to Gtown, but my mom and I were both impressed by how much time the doc spent with me. Everything still felt very personal even with such a large operation going on. My favorite part: THERE ARE SNACK ROOMS! I started my Friday by meeting nurses and the doc. The doc confirmed my medical history and went over how she planned on continuing the same treatment plan that I had started at Gtown. We had to wait awhile for an x-ray to be sent over to CHOP confirming the placement of my port. The mom and I passed the time by playing lots of cards and munching on goldfish, cereal, and milk from the snack room. Once they got the all clear, the nurse accessed me to draw blood work to confirm I was healthy enough to start another round of treatment. They hooked up to a stand and fluids to get all hydrated up in preparation for chemo later on. Then followed more waiting, more cards, more snack, and some sleeping. Blood work came back, and I was then transferred from the doctor's officey part of the clinic to the outpatient chemo-giving part of the clinic. (I'm sure they have fancy names for these places, but you get the gist.) The plan was to start receiving chemo in the outpatient center and then transfer me to a bed when one opened up in the inpatient part of the hospital. By the time the nurse from the doctor's officey part communicated with the chemo outpatienty part and both nurses had talked to the doc, a bed had opened up in the inpatient part of the hospital. And in those few minutes of walking, people witnessed the largest kid they had ever seen wandering the halls of a children's hospital. We got all settled in to my room, met the nurse, and ordered food. CHOP has AMAZING food! What a pleasant surprise after Gtown. Seriously. There was a whole menu packet. I had Build-Your-Own Stir Fry for dinner knowing I might not feel much like eating in the days to come. Unfortunately, I wasn't able to start treatment until about 9pm because they were so busy. Fortunately, me college roomie, Mal, and her fiancé live within spitting distance of CHOP and were able to come and entertain me until I started treatment. Plus they brought donuts. Always a good thing. Overall the whole weekend went really smoothly. The nurses thought I was hilarious (because I am). One of them even said I was a "breath of fresh air." *casual humble brag* My dad and neighbors came to visit on Saturday. Lanie arrived on Saturday too to spent the night with me. I had a grand old time watching TV with her and pretending to help her with her homework. On Sunday, I was discharged at 2pm! Woo! So much better than a midnight discharge from Gtown. My mom and I drove Lanie back to Temple, and then we headed back home. Chemo sucks, but it was a lot more pleasant this weekend being surround by family and friends. You know, those people who you know so well that silent company isn't awkward but rather exactly what the doctor ordered. I described chemo to my dad a few weeks ago as what I imagine wizards feel like in Harry Potter when their souls are being sucked out by dementors. I shared this metaphor with a friend who has another friend going through chemo right now. He said that friend described it as "living life as a turtle without a shell. Scared, lethargic, mostly hairless, unable to defend myself." I would say his description is pretty spot on as well. But treatment was made so much better this week by my loved ones, so thank you. Also on the upside, it also feels like it's my birthday ALL THE TIME because of all of the wonderful cards and gifts and food I've received from people who I know really well, people I don't know that well, people I'm getting to reconnect with, and some people I've never met before. So thank you. To everyone. You've all made this awful experience much, much, MUCH better than it could've been. Rewind: For Halloween, my Godmother came by to hang out and eat pizza. I was so glad I got to see her while I was feeling chipper. Chipper Emma needs company and entertainment arguably even more than boring, sickly Emma. We had a grand time catching up and chatting over candy. That night, I decided I had enough with my hair. I was constantly wearing hats and head coverings just because of the quantity of hair that was falling out. Plus, my head hurt like a b. I had asked my mom to buzz my head several times that week. However, all of those moments involved tears and large quantities of hair falling out of my head. So every time we would just postpone the dreaded head buzzing a little bit longer. Apparently I underestimated how traumatic losing my hair was going to be. So after a final "are you sure" from my mom, she buzzed my head. And boy did it feel better!! There were some tears from me (and probably from my mom because she knew how much I had been struggling with this decision: to buzz or not to buzz). But in the end it was the right choice. I now no longer have to spend large quantities of time standing in front of a trash can as to not shed all over the whole house. I don't have to watch my hair collect at the bottom of the shower drain. I don't have to itch my head every 30 seconds. I don't have to squeeze my head because it hurts so badly. It's crazy how much of an on/off switch my hair had. One day, I wasn't losing hardly any hair, and the next day I felt like I did 10 years of male pattern baldness in 24 hours. Thursday, I went down to Gtown to show a girl around my house. Good news: She's taking it! I'm giving her a discount, but she is taking the lease, so that's one less thing to worry about. I just need to sort out logistics. Now the only thing I need to figure out is why in the effing world did Georgetown send me a bill for $15,000!!! Hard pass. Please, enjoy this photo of bald Emma. This is right after the cut, so there's still some fuzz up there. Just wasn't ready to share until now. I still have some fuzz, but more fell out in the hospital. But my eyebrows are still hanging in there! Unfortunately, my leg hair is also... Just barely though. I could probably wax them with scotch tape if I really wanted to. Thought of the day:
You know how you always have to say Wed-nes-day in your head every time you have to spell Wednesday? Well what if in previous Englishes, there was a -nes- in every day of the week? Monesday, Tunesday, Wednesday, Thurnesday, Frinesday, Saturnesday, Sunesday. Makes sense, right? Your linguistics lesson for the day. Or stupid thought by a grad school drop out. By:Bethany (English major and Speech language pathologist) and Emma (pretend linguist and grad school drop out) Got to see the Lanie race this weekend at Head of the Schuylkill. I'm feeling physically very good, so it was even harder to have to sit and watch races when I was looking forward to my first head racing season as a sculler. I'll be back for Spring/Summer racing though which is what really matters, I suppose. I also got to see my alma mater come down the course. My pal Reggie Mac came with me as my babysitter for the day. She had great fun being stared at for wearing a Penn State jacket in the Temple boathouse. All I gotta say is, hey man, you guys may crush us on the river, but we have a better food tent than you. And we gladly cheered for both teams. Unfortunately, by the time Reggie Mac and I started working our way back over to the Penn State tent as Lanie was launching for her race, our former teammates had already finished loading their trailer and were on the road home. And to make it even worse, the next day there was a big package of fun drawings and jokes and candy and a Penn State hat and a Penn State crew shirt and a bracelet and a card and origami waiting for me! And I didn't even get to see everyone!! I was so happy yet so upset at the same time. Can't thank Hannah and Penn State Crew enough. I only rowed for them for one year, and for them to put a box full of goodies together was TOO SWEET. Also just wanna say that after a day full of racing, they had to go home and clean Beaver Stadium the next day. Those kids work so hard, and then turn around and spend their free time making stupid drawing for their former teammate. Race day was Day 15 of treatment. I was told hair loss could start 2-4 weeks after starting treatment. Apparently my body likes to stick to the the schedule because when I came home and showered, I lost A LOT of hair. I was told my hair would fall out slowly in the shower or quickly on a pillow. Nobody said anything about quickly in the shower. Not gonna lie, there were some tears. I haven't showered since. It's actually incredible how much hair you can lose and still have hair on your head. Also, there is definitely a hair hierarchy. Head hairs are royalty and leg and armpit hairs are plebs. Pubes and eyebrows and eyelashes falls somewhere in between. And apparently it's DOWN WITH THE QUEEN first because my leg hair doesn't seem to be going anywhere. I made a pretty conscious vow to myself not to shave when I got diagnosed because what's the point, right? Last week my mom asked me if I had lost any hair yet. I informed her that my head hair didn't seem to be falling out any faster than normal, but I had noticed hair in my nether regions falling out in the shower. (Too much information? Sorry, not sorry. It's funny because some people have told me I'm "brave" for sharing what I do. To be honest, it's a coping technique. If I write about it, it become more normal. Well that's what you get for using the b word: pubes. And I've always been an oversharer.) She told me she thought I shaved them. Once upon a time, I did shave them off. Then I decided I wanted to do the Mifflin Streak my junior year of college, so I grew them back. You know. For aesthetic. And they've been with me ever since. But now we must part ways. I told you that I'm an oversharer.
Anywho...I am indeed losing my hair. |
AuthorI'm Emma. I love food more than anyone will ever understand - specifically cheese, chocolate, bread and pretty much every fat & carb combo you can think of - apple cider donuts, ice cream, the list goes on. Fats and carbs just go so well together. Don't you think? Why is it that when I'm tasked to describe myself, I always talk about food? Anywho, I'm a grad student and rower training studying and training in DC. Here's to having no free time and loving every minute of it (jk...I'll tell you the bad stuff too)! Archives
July 2020
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