Chemo: Round 2…Also Almost

Well good golly Miss Dolly, have I dropped off the face of the earth? Seems that way.

May it never be said that I am a consistent blogger. Informative, maybe, but not consistent.

Today’s post is really a boring one, for I haven’t done much. In fact I seem to have reverted to an infant. All I do is eat, sleep, and poop (pardon my vulgarity). That is quite it. In terms of chemotherapy, I’m still waiting on that dismal 6-day stay. In this round, the first appointment, the 2-day hospital stay, really knocked me for a loop. Day 10 after the 2-day is supposed to be the lowest point, and boy was it ever. I was horribly weak and pale. Luckily we had a clinic appointment to check numbers and other fancy things. I received 2 units of blood, which was literally like being injected with new life. I’ll take this moment to thank any and all blood donors, and encourage those who are able to donate to do so. I was a blood donor before my diagnosis, and now, being on the other side of the donation, I appreciate the value of a donation even more. I wish I could come up with an appropriate analogy to explain how I feel after transfusion. It’s probably what Bella Swan felt like when she became a vampire (apologies for a Twilight reference).

At this moment I’m improving every day: carrying on with my infantile duties, waiting to be brought back down low by the 6-day trek. If I didn’t have the nose of a bloodhound right now, and if I weren’t nauseated by the plastic, sterile scents of the hospital linens, it’d probably be fine. Unfortunately, neither of those “if’s” is true. However, this is not a cry for pity. In my last 6-day stay, my next-door neighbor was celebrating his 83rd day in the hospital. I would not be able to handle that.

Again, I’m going to conclude with a huge THANK YOU to all of your support, prayers, amazing gifts, meals, cards, and everything else. I am able to tackle every new day because of it.

The Interim

Hello all! I just wanted to throw out a quick post between treatments. The day after I posted we went back to clinic for another try, with success! I was admitted for my 6-day inpatient treatment, which I honestly don’t remember a lot of (sorry for ending a sentence in a preposition). I slept for most of it, and most of my waking hours were spent peeing. TMI again? Sorry. I tried to watch The Lego Movie, but the next day I couldn’t remember watching it. I watched it again, but forgot it again. I now know that I will not get anything productive done in the hospital. Don’t worry, I watched it for a third time last night and loved it. I know you were probably worried.

I’ve never really been scared of or uncomfortable with hospitals, and I’m still not, but staying in them is even less fun than you might imagine. I’m really sensitive to different smells right now, and the plasticky, sterile hospital smell is the absolute worst. Mom and I found that putting a stick of gum on my upper lip is a great way to mask the smell. Apparently, surgeons often put oil of wintergreen on their upper lips during surgery for the same reason. Dad failed to share that with me.

Anyway, I’m just throwing out some stuff right now in the time between treatments. More of my stubbly head hair has fallen out, which is good for sleeping because it’s prickly. My eyelashes thinned a little bit, which sucks. I am, however, holding tight to my eyebrows. Hooray! It’s the little things.

Chemo: Round 1…Almost

I apologize for not having posted sooner. I was hoping to wait until I have finished my first round of chemo so that I could make one big post about my first complete experience. Unfortunately, I’m still waiting for my counts, so that’s not going to happen.

What do I mean by counts? Every time I go into clinic for chemo, my port is accessed and blood is drawn for labs. The labs come back, providing an array of information regarding my blood and my immunity. The most important count is the ANC, the Absolute Neutrophil Count, because it will determine whether my body can handle more chemotherapy drugs. I have been waiting on my counts to rise for about 2 weeks now, and I can’t do a thing to help.

My chemo schedule is this: week 1, two days inpatient (meaning I am admitted to the hospital; week 2, one day outpatient (meaning I am just in clinic); week 3, 5-6 days inpatient; week 4, rest.

Week 1 was not very bad. My nausea was well controlled: I never threw up, I just felt a little off. After coming home from the hospital I slept for about 3 days, eating very little. After that, I felt normal. Week 2 was a simple 15 minute infusion of Vincristine, but it turned out to have the worst effect. The next morning I was due to take my APUSH exam, but I was too sick to go. It was the first time I’ve thrown up in years (TMI, I know.)  Another 2 days of sleeping and lounging, and I was back to my old self. Now, I’m waiting on my ANC to rise so that I can begin Week 3. After 3 complete cycles of chemo, we’ll be ready to surgically remove the tumor.

Let’s talk about hair loss. A few days after my outpatient infusion, my hair was still completely intact. However, I had been told that my hair would fall out about 2 weeks in. I had already cut and donated 8 inches so that the loss would not be so dramatic. How much time did I have left? That night I hesitantly ran my fingers through my newly shorn hair, and there was quite a lot of hair in my hand. It had begun. I spent the rest of the night pulling hair out myself, desperate to be in control of my situation. The next day my parents and I tried to find hats, and dad finally found a couple at Claire’s. Matthew and Katie followed soon after with several adorable hats. I am dearly loved. My hair continued to thin, and, tired of looking sicker than I am, I decided to shave it. Matthew shaved it for me. Remember when I said I am dearly loved? I am.

I’m much less upset about my baldness than I thought I would be. In fact, I rather like the look. My head is a weird shape, though. It’s long in profile, like Megamind or something. The silver lining is that Sir Arthur Conan Doyle described Sherlock Holmes as having the same head shape in The Hound of the Baskervilles. Coincidence? I THINK NOT.

I’d like to conclude by thanking you all again for your continued kindness and prayers. Reader, take this time to do something nice for yourself, for me. Even if it’s just taking a minute to do your favorite thing or watch a video of a baby laughing. I wish more than anything that I could properly repay you.

And So It Begins

Last week, my hip area ached so badly that we went back to the hospital for some imaging (I had had a biopsy on my pelvis there the Thursday before) to figure out why the area had begun to hurt so intensely a week after the procedure. We waited for 4 hours for the insurance company to approve the CT scan, and I was on the table for 5 minutes. Super awesome. The radiologist said she didn’t really see anything overtly wrong, and we were free to go. I say this only because I promised to capture my journey on this blog, and this is what happened. I also wanted to mention that I had the most amazing smoothie from the MUSC cafeteria…it was so tasty. Mmm.

The results of the biopsy came back inconclusive a few days ago (the pelvis one). The tissue was found to be necrotic, which essentially means it’s dead. There were cells that could either be lymphocytes or Ewing cells. Knowing this, the doctors have chosen a more aggressive track of chemotherapy. That chemotherapy begins tomorrow.

The time is now. Matthew and Katie brought me lots of cool stuff that will make the chemo suck less, and in doing so they’ve given me the illusion that I’m going on a trip. That’s how I see it right now. I’m just packing up all my cool new stuff and going on a field trip to the hospital.

I’ll post again when I can regarding the chemo itself. I have no idea what I’ll feel like, but hopefully I’ll be able to post a thing or two about how I’m feeling mid-treatment. Anyway, thanks for reading my rambling. I hope you’re doing well.

A Blanket “Thank You” Post

It’s time for me to actually update this poor blog. And it’s also time for me to thank you properly.

I haven’t been responding or updating or doing anything a decent person would do because I was genuinely overwhelmed by the amount of love and support I was and am still receiving. I was literally paralyzed by the comments and likes and profile pictures and gifts and cards and flowers and text messages and prayers…and I don’t say “literally” because I’m hip with the cool words, I say “literally” because I couldn’t have responded appropriately if I wanted to. Now, though, I think I am ready to attempt to show my gratitude.

Thank you so much. Yes, you. You reading this. I feel every ounce of your support and your love and I don’t know how to reciprocate accordingly, which drives me crazy. I never saw this cancer coming, and I never thought (in the 10 minutes between receiving the news and receiving the first messages) that I would be as supported and as prayed for as I am. I can only hope that there is an opportunity in the future for me to return the favor and to make a difference for you.

I’ve added a picture of the boat at Folly that my amazing cousins painted for me. So many people have changed their profile picture on Facebook to the boat to show support, and I haven’t been able to comment on each picture to thank them. I HAVEN’T BEEN ABLE TO THANK EVERYONE! THANK YOU EVERYONE!!!! Anyway, here’s the picture.

follyboat

 

Mini update: Last Thursday I had one last biopsy for a spot on my pelvis called the right iliac crest that showed up hot on the PET/CT scan. Many things can show up hot on this type of scan, which is why I had a biopsy. The results have not come in as of right now, but once they do we will be able to determine what type of chemo I’ll be treated with and when I’ll start.

The Situation: A Summary

Hello! Matthew made me this rad blog, so I’m going to use it to keep a running log of everything that’s happening. This post, though, is merely a rundown of my situation for those who have not heard a lot.

About three weeks ago I was waiting for my shower to get warm, and bent to scratch my back. I noticed a lump on my lower left back, told my mom about it, had an appointment later that day, got an MRI that evening, and quickly realized we weren’t dealing with a lypoma or hematoma like we had thought. I had a biopsy of the lump soon after this, which was pretty cool since I got to watch it on the ultrasound while it happened. (If you don’t like needles, don’t get cancerous tumors.) To make a long story short: the lump is a Ewing sarcoma, which is cancerous but curable. It’s found mostly in children and teenagers, and the cause is entirely unknown. I thought it was a dragon egg, but for some reason that was ruled out fairly quickly. Hmm.

To be frank, I don’t really remember dates or anything like that. There was a CT scan, where the radiologists and other doctors that looked at the images saw some teensy nodules on the lungs that concerned them. I was then scheduled for a surgery which would include a lung biopsy, bone marrow aspiration, and the installation of my chest port. The lung biopsy was planned to be done thoracoscopically, but because the nodules are so small a thoracotomy was also a possibility. Luckily, only part of the biopsy had to be done through thoracotomy (thoracoscopic surgery is much less invasive).

I spent 3 days recovering in the hospital following the procedure, two of which I spent very much drug-addled. I thought I was cognizant, but apparently I was not. If you came to see me in the hospital, I apologize for failing to converse with you. I hope I thanked you though…if I didn’t, then thank you. One thing I did that I remember was ask for “liquid water.” Everyone thinks this is riotously funny, but honestly I just didn’t want ice chips again. One must be very specific sometimes. In terms of anesthesia before the procedure, I remember giggling a lot and also some bright lights. That is literally it.

The future as it stands includes about 9 months of chemotherapy, including surgery to remove the lump. I’m vain: the hair loss is going to be the hardest part.

Sappy part:

So now, on Easter 2014, I look to the future with the same emotion an inexperienced and untrained runner might feel if forced to run a marathon. The road is a long one, but it is one that can be traveled. And though I am nowhere near ready to travel it, I will. A long time ago I decided that I if given the option to do something or stay home, I would do that thing. I always chose the uncertain over the comfortable. I did so because I live by the mentality that no moment is guaranteed. I am glad that I live this way: I have had more fun than I deserve to have, and I have enough amazing memories to span three people. Now, facing this challenge, I am not regretful. There are no “if only…”‘s. No day but today.