Upward and Onward

Convincing myself to sit down and write a blog post is like herding cats. But I’m here now, so that’s what counts…right?? Today I just wanted to outline my new plan and my goals for the next few months.

My new regimen is an oral combination of a pill and a liquid solution of Ocean Spray Cran-Grape (no, seriously) and chemo. These drugs are much more tolerable than my previous ones, and you’ll notice I didn’t mention any inpatient parts. I’ll go to clinic just once a week to check counts, but these drugs aren’t expected to affect counts nearly as much. I may even get to go to Clemson in the spring. I don’t want to jinx myself, though, so I’ll leave it at that. Just picture me quietly vibrating with excitement about it.

Soon I’ll start radiation to the area behind my sinus. I’ll have 6 weeks of it, 5 days each week, for about 5-10 minutes a day. The side effects we’re most worried about are possible throat and mouth sores, but they shouldn’t show up until the last few weeks. I’ve already had my headrest, mouthpiece, and mask made so that my head will be in the exact same place each day.

A cure is against the odds. I’m not eligible for trials because the disease is too small to be measurable, which is a a good thing. There are lots of trials going on right now, though, so if I am ever eligible in the future there are other possibilities. Regardless, I don’t think about odds too much. I’m a person, not a percentage.

I’m most excited about the combination of freedom and treatment this new plan offers me. I won’t be dependent on counts, inpatient chemo, or long fever stays determining what I do and don’t get to do. I even had sushi the other day. Do you know how long it’s been since I’ve had sushi? The answer is very long. I’m also not too concerned about going through radiation. The side effects are different this time, but I’ve done it before and I’ll do it again. Is the mask they made really really really close to my face? Does that make me bug out a little? …..yes. But as I always say, nut up or shut up.

The response to my first post was overwhelming and amazing. I am so grateful to everyone who liked, commented, shared, messaged me, etc. I’ll take all the prayers I can get. If I could hug each and every one of you, I would. Believe you me.

Reality Check

This post is gonna be a hard one, so bear with me.

I went in for more chemo a couple weeks ago, a longer stay that would enable me to leave for college and come back into town for the shorter stays. I’d be able to go to school and still finish treatment. It was the ideal situation. However, my jaw had been bothering me, aching and keeping me from eating normally. It was the second time it had happened, so I had a scan to see what might be the problem. There was something behind my left sinus, but it was unclear what it was. I had a biopsy two days later: Ewing sarcoma.

I don’t know what this means. I’m having scans in the next couple of weeks to see what is happening. Until then, I’m just waiting around. I’m not going to school right now, I’m not moving in, I’m not doing anything. My plans are shattered like fine china.

I apologize that this post isn’t jovial, and that my thank you notes from graduation (I know, I’m ridiculous) are only half-done. I’m doing the best I can.

The State of the Union + Gut Mutiny

I’m resurrecting the blog. The light at the end of the tunnel is blinking in the distance, and I’d like you all to see it with me. This post will be in two parts, so it may be a little long and a lot verbose. Grab a snack, use the potty, settle in.

PART I: THE STATE OF THE UNION

How much treatment do I have left? How am I doing? These are pertinent questions, reader. I’m glad you asked. I have 3 cycles of treatment left, if I’m understanding it correctly, which I’d like to think I am. Do you remember long ago, when dinosaurs roamed the earth, and I had a cycle that consisted of a whole week inpatient, a 2-day stay inpatient, and an outpatient day? My new cycles are a little like that. Thursday I will hopefully embark on the beginning of these last 3 cycles. However, my dosage has been reduced because the previous dosage was smacking me upside the head so hard I couldn’t recover in a reasonable amount of time. How rude is that? I’m tolerating this new dose much better so far, which has given me more freedom to eat well, exercise, and just do things in general without laying around like a slug. Slugging is only fun for so long (remember this if you are tired of school or work). I had scans a couple weeks ago, and they turned out really well. Nothing unexpected, which is good to hear. So now I’ll just keep plugging along, I suppose.

But what about school, you ask? I’m taking two classes. I am following along with a Government class at BE from home, and taking a Microeconomics course online at Trident Tech. They’re both going really well, but I am having to make up a lot of my Micro work because of Part II, which we will discuss in just a moment. In terms of college, well, those are muddy waters. I was accepted to Clemson, but no one knows if I’ll be done with treatment in time to attend for the fall semester. Even though my treatment schedule is mapped out, there is no way to know how many weeks of rest I’ll need in between each infusion. This is as exactly as frustrating as you might imagine.

PART II: GUT MUTINY

I’m not sure this was really fully explained to many people, or if anyone heard about it at all. I was a bit out of it, to be honest. Let me spin a yarn for you.

Near the end of February I got very sick because of a gut infection. For a couple weeks we thought I was just constipated (everyone poops, okay?), but one night when I tried to go to bed I had a horrible stomach pain that kept me awake. I tried to mollify it with a heating pad, but when I started throwing up black stuff we decided to go to the ER. Perhaps we should have gone to a priest instead because writing that sounds like an exorcism would have been a better solution. Anyway, as the ER was doing its thing I was steadily declining, and I am told I went into septic shock (because the infection had reached my bloodstream). I was in the ICU for 3 days and in 7B for about two weeks after that. I was on TPN, which is a replacement for food and nutrition, for a week while my intestines recovered enough for me to eat. I had no idea how sick I was at the time. I think that was a good thing because I didn’t worry or get scared, I just kind of shut down and let my body heal. Now, though, I am all back to normal and poopin’ on the regular.

So that’s what’s up. That’s how I’m rollin’. I’d like to try and keep up with this blog again, and I apologize if you only keep up with me here and haven’t heard anything. I failed to keep this page updated simply because nothing of import was happening, but I feel like now I’m on the home stretch. I’ll end this post in the usual way, by thanking you all profusely for your prayers, cards, and gifts. I’d also like to offer you a bit of unsolicited advice: be grateful for the little things. Be thankful for your education, your job, your health. It’s hard to step back and look at the big picture, but it’s important.

19 Weeks and Counting

It has been many moons since we last spoke. I think the end of my radiation treatment is as good a time as any to make a post. Let’s start with radiation, shall we?

Radiation was uneventful. My plan was 6 weeks of treatment to target the primary tumor stemming from the rib and the metastatic areas on the iliac crest and femur. Remember that inconclusive biopsy once upon a time? Apparently, upon further inspection, it did turn out to be Ewing’s. Nevertheless, radiation went well! Side effects are dependent upon the area of the body receiving radiation, so my main concerns are kidney problems down the road (my left kidney is right behind the primary tumor) and bone weakness. Skin irritation is common in a lot of patients. I was SO CLOSE to getting away without any burns, but alas. I finally got a light burn on my second to last treatment to my iliac/femur area. It’s like a sunburn mixed with a rash. Not a huge deal, and certainly not a hard price to pay for the effects the radiation will have.

“Hannah, why the title?” Oh, what a good question! Thank you for asking! The reason I titled this post “19 Weeks and Counting” is that I have 19 weeks of chemo left, not including rest weeks. I can have anywhere from 2-5 rest weeks in between weeks of chemo. It won’t take as long as it did during radiation, though. Because my radiation was largely to my pelvis, a big blood-producing area, it was near impossible for my body to build my blood back up to a level that could withstand more chemo. That’s why it took me about 5 weeks to get back. Now that I’m finished, it won’t take me as long to get ready each time, but it will still be a longer journey than I expected.

My projected end date has been pushed back considerably. I will not be back in action in February like we thought. Instead, I’ll be back intermittently in the spring, when my counts are up.

Physically, I’m on track. Emotionally, I struggled for a while. My senior year is being taken from me one week at a time. I’ve never been one to do things normally, though, have I? I was bitten by a snake, I only applied to one college, and I listen to show tunes almost exclusively. I’m a weird kid, we all know this. It was silly of me to think I would go through high school without any excitement. With a life like this, who knows what the future holds? I’m not worried about rushing back to school. I see my friends as much as I can. I have bad days, of course, but after a while you just keep moving forward. You take it all in stride, and you just keep going.

“Like a Baby”: My New Normal/FAQ

Hey kids! This is that one post where I asked for questions in a Facebook status, and then like two people actually asked questions. I get a lot of repeat questions, though, so I do have some other ones I can answer.

When are you coming back to school? Right now I’m on track to be back at school around the beginning of February. While I’m out I’ll be taking the last English course I need to graduate online, and when I’m back at school I can take the semester courses I need for graduation.

What can/do you eat? What are your top 5 foods? What I can eat depends on when I last had chemo. 2-3 days after chemo, my most exciting cuisine is maybe a bagel or something bland and simple. When I am out of chemo for around a week, though, my appetite is entirely normal. My taste buds have changed: where I previously loved red meat, soda, and chocolate, I can now only eat these things on occasion. I prefer sour candy and foods only children like, such as Easy Mac and pizza rolls. I really do eat like a third grader. I would say my top 5 favorite foods are, in no particular order: potato salad, ramen noodles, iced coffee (this absolutely counts), Ye Ole Fashioned peanut butter chocolate swirl ice cream, and pad see ew (it’s Thai).

What is chemotherapy like? Chemotherapy is like having life sucked out of you through a needle, to be completely honest with you. Receiving it is not that bad for me. The overall weakness and nausea are the real problem. For a few days after chemo, you feel like a zombie if you get out of bed at all. Walking long distances is not an option; stairs are the worst. However, it gets better each day and because I have to wait on my blood to be ready for chemo again, I often have a week or so of time where I feel entirely normal. Those weeks are the best weeks.

How can I help? I honestly feel conceited even answering this question, because you don’t need to do a thing. Your prayers are enough and they HAVE been working, so please do keep praying. I receive so many cards and gifts and I love them all, but don’t feel like you ever have to do something like that. I never feel like I can thank you properly.

Could you imagine going through this without your faith? No. If you don’t have faith, what do you have? I’ve always been very private about my faith, and my philosophy has always been very simple. Give your problems to God and don’t worry about them, and if you don’t love everybody you’re doing it wrong. I’m not angry, I’m not confused, I just keep moving forward.

I must think I’m something special, interviewing myself like that. I thought y’all were gonna ask weird questions like do I still have arm hair (I don’t), but I guess that’s only something I would do. I hope you got something out of this, and still ask questions if you have them! I’m an open book.

Where in the World is Hannah Sandiego?

Get it? Like Carmen Sandiego? No? Forget it. I’m not as funny as I think I am.

Since we last spoke, I had another fever and some more chemo. The fever was much the same as last time, but this time it was during Shark Week so I was more entertained. The chemo was also boring. I sleep the whole time, and I never remember any of it. YAWN. You came here for something interesting, and by golly I’m gonna give it to you.

This past Tuesday I had a day full of scans to assess my tumor situation for surgery. If you recall, the areas in question were my back tumor and an uncertain spot on my pelvis. Anyway, I got to the hospital at 8:30 a.m. and got home at 2:15 a.m. I’d like to thank the pumpkin spice latte I had that afternoon for this accomplishment. I had every scan under the sun that day: a bone scan, a PET/CT scan, an MRI. Not to mention a unit of platelets and two units of blood. Many tiny naps were taken.

So what became of all of this flim-flammery, you ask? Good things, friend. The tumor and pelvic mystery responded very well. Though radiation and chemotherapy are still to come, I will NOT have to have surgery to remove the tumor. This is incredible news, and the doctors were shocked at the response. I was not surprised. Prayer works. Let me take a moment to say, however, that I’m not out of the woods yet. I still have 22 weeks of chemo and plenty of radiation. The finish line is not in sight, but I like to think that I’m over the hill.

Take a second to pat yourself on the back, reader. Your prayers, your thoughts, your hope…it’s working. Keep praying, keep thinking, keep hoping.

Friday Night Fever

I’m back! I’ve got an exciting story, too, so grab a beverage and get comfortable.

This past Friday, I went to MUSC for an EKG/Echocargiogram (to see how my heart is functioning with all of the chemo) and then some labs in clinic. In clinic, my labs called for a transfusion: 1 unit of blood and 1 unit of platelets. Since the previous evening, I had had a headache and was sporting a particularly sour mood. Finding out that my morning visit to the hospital was going to become an all day stay upset me even more. I had planned a nap for my afternoon. Anyway, I didn’t feel as rejuvenated as I normally do following the transfusion, but at the time I didn’t think much of it. I went to bed as soon as I got home, chilled to the bone. My mom woke me up at about 11 that evening, wondering why I had slept so long. We took my temperature, and sure enough, I had a fever of 102.6 and a raging headache. Back to MUSC for me. To make a long, arduous story short, I was admitted to the hospital until Monday morning. The doctor on call was actually surprised that I hadn’t already had to come in with a fever. This can apparently be a recurring problem for some kids. The main concern is bacterial infection, so for my entire stay I was kept on two antibiotics. By the end of my stay I had been given three more units of blood and two more units of platelets. My fever broke on Saturday night if I remember correctly, but I had to be fever-free for 48 hours before I could be discharged.

Bonus story: When I got my first dose of one antibiotic, I had a reaction called Red Man Syndrome. My face got incredibly red, and my entire scalp itched like wildfire. It’s a common reaction, but if the antibiotic is administered at half the speed it typically doesn’t happen again. Pretty scary, though, at the time.

That’s enough for the huge blocks of text. Tomorrow I return to MUSC for my first session of my third cycle if my body is ready for it. After my third cycle, it’s surgery time. Right now that’s scheduled for mid to late August, but that could change if chemo is pushed back too much.

I’ll end this with my regular thank you to everyone. You have all continued to support me and keep me going, and I could not be more grateful. My oncologist was surprised at how much the tumor has disappeared, but I was not. I attribute it to your prayers and your continuous love. Thank you so much.