20 weeks left!

Well, if you haven't already heard the news, all your praying, thinking, wishing and hoping paid off. As of last Monday my viral load was undetectable meaning my treatment will only last 24 weeks!!! And since I've just given myself the 5th shot, that's 19 weeks and some days left. The last day I will take pills is March 9th -- happy birthday dad! happy no more hep C me! 

It's hard to believe that all within a year, I have been diagnosed with Hep C, started treatment and now have undetectable traces of it in my body -- so exciting!

Anyways, good news aside, this week has been pretty rough for me. The same day I found out the good news, I also got news that my neutrophils had depleted so low that I needed to take the Neupogen. Basically, from what I understand, you are supposed to have numbers above 1500 and my number was 680. An ANC below 500 is considered severe neutropenia, so obviously you can see where I lie. Also, my hemoglobin was 10.2, which the Dr told me at 9 it would be considered very low. So basically, my lab reports show me being feeble and weak, yet I don't always feel as bad as the reports say I should! That being said, my estimated bodily age for this week was at least 90, maybe 108. I know EXACTLY what it feels like to be an old woman, so if you're curious, I can fill you in. 

The Neupogen made walking from the couch to my bed hella-difficult. Imagine walking around with the tiny people from Gulliver's travel banging their hammers and spikes into your largest bones (ie hips, thighs, you know, the big ones). I had some difficulty giving myself the neupogen injection because it was in a vile and a syringe rather than the handy-dandy redipen that my interferon comes in. I could not for the life of me draw the medicine out of vile without getting air bubbles in the syringe. I had to eventually call the Dr and go in and get a lesson. The pharmacy did not give me instructions, so all I had was the vague instructions on the pack of insulin syringes they gave me. Needless to say, you really need more instructions when it comes to injecting yourself with something. More is always better in this case. Anyways, so I tried to space out my two injections this week, but because I failed miserably, they ended up being the same day. Note to self: NEVER DO THAT AGAIN. All my other meds give me body aches, and now this one too. I desperately considered getting a wheelchair for about 15 hours on Friday. Lucky for me, I woke up on Saturday feeling much better and have felt better ever since. 

I've been really tired this week, so I've spent most of the weekend trying to catch up on sleep. I hoping that will coax my neutrophils into producing more so hopefully I'll be back down to one injection next week. The Neupogen is dependent on my labs each week, so every week it will be a different story. 

And on the final upside, I've rekindled my flame with McDonalds. (see below). After going into a McDonalds for the first time in a long time last weekend (I think since I've been a Vegetarian at least), I've been dreaming of french fries ever since. I've been having a lot of trouble eating this week (probably because I ate so much last weekend..ahem..aunts!..ahem) so each fat snack is a new and exciting journey (NOT). I broke down and went to mcdonalds. Good news -- a large fry is 25g of fat. So I ate 20g and Lindsey kindly took the other 5g off my hands. We both agreed we could probably have eaten double what we actually ate -- and she considered going back to McD for another large fry lol. We also researched and Whataburger plain biscuits are a stellar 17g of fat, so I'll probably be eating a couple of those this week. 

Hellooooo McDonalds -- note: this is the same meal (though smaller) that Grandma used to get me on the way to dance class every week. She would be proud to know that I still LOVE french fries, bbq sauce and a diet coke :)

I've come to the conclusion that since I'm not really eating anything, I should probably just eat ALL of the things I never eat. It's all about portion control right? So if I limit my portions to three things a day and those three things are outrageous in fat, then I won't gain weight...hopefully. I can't really say that plan's been working just yet, but it's still in the infancy stage. 

I'm still eating a smoothie every morning, though this week I'm going to try some new flavors, and I'm still poppin' pills like its my job.

Other than that, all's well. December 16th is my LAST day of fat snacks, waking up at 6am to eat, and taking 6 pills a day. THANK GOD. If you're in the Tampa area, my last pill will be at 2:15pm and I do believe a celebratory lunch is in order. 

Keep sending your good vibes, as I still need all I can get. Aunt Mary Beth comes this weekend! Can't wait to give another Austin tour...this one might consist of slightly less food (sorry!)

Almost done with phase one!

This week has been pretty smooth sailing. I may or may not have decided to eat the sticky buns pictured below for every meal for the next 8 weeks. 

Holy Pecans! @ Uppercrust Bakery

My loving and generous aunts (pictured below) came to visit this weekend. They allegedly came to help me with stuff, but I think they actually came because of the bakery that houses the sticky buns.

Aunt Marty  & Aunt Duffy @ The Green Mesquite BBQ

We definitely took the food tour of Austin, with an impeccable tour guide I might add (that's me!). It's good that I'm finding food appetizing and eating more than just smoothies, though I might have gone a bit overboard this weekend. 

My health has remained intact this week. I'm still nauseous here and there, even with the Zofran. Whenever that happens, I just stick to eating bland food. This is probably the first week so far that I've felt fairly normal. I wish I would have believed them when they told me this would happen back in Week one. The fits of hysteria would have been a lot easier to handle knowing that I'd feel better after my body had a steady flow of toxic chemicals circulating in it.

When Marty & Duffy were here, since Duffy's a nurse, I asked one of my many panicky questions about what am I supposed to do if I drop a pill?! Now granted, this wouldn't be a big deal to the average person, but the other day I dropped a Zofran and it slid under the disgusting bookshelf, leading me to worry about what would happen if I dropped one of the Hep C pills. Beanie assured me that I would not be the first person to ever drop a pill and that they probably just give me a new one, but I continued to fret. Then we did the math. The Incivek (purple pills that require the fatgrams) 12-week treatment costs $49,200. That's $4100 a week, $585.71 a day, and $97.62 a pill. Aunt Duffy then answered my question -- move the shelf. get the pill. wipe it off and take it. no excuses. 

Considering the Incivek is just ONE of the pills I'm taking, I decided that my pill box has a pretty high street value, and if things didn't work out with the treatment I could make some quick cash in the local Hep C drug rings. (just kidding!!) 

Good thing I'm heftily insured, or else I'd be equally as unheftily poor and living under a bridge with my box of pills. Also a good thing you need the whole treatment to be successful, so I'm not particularly worried about being mugged for these awful purple pills. 

Other than that, I sincerely appreciate everyone's thoughts, prayers, texts, calls, facebook messages and get well soon cards! You have no idea how loved (and popular! lol) it makes me feel to have my phone be blowing up at all times :) Keep 'em coming! 

I find out Wednesday whether it's 24 weeks or 48. Cross your fingers, toes, knees, elbows and the limbs of all of your dolls, pets and imaginary friends. I need all the good karma I can get. (As a side note, because I'm 24 years old I feel like that gives me a statistically significant greater chance at having treatment for a certain number of weeks!)

Stay tuned... 

Day 15

As my mom told me last night.... 3 shots down, no more than 45 to go! I feel like that's a ridiculous statement, but hey, it's my reality right now.

This week was MUCH better than last week. For the exceptions of a few minor details, everything went pretty normal. By taking the Zofran, my nausea is under control -- only acting out every now and then...which means I can eat stuff, both a pretty cool and huge for me. I haven't been eating a whole lot because I don't really have an appetite, but I try for nutritional smoothies when I can. I generally eat one meal and my "fat snacks", which seems to fill me up for the day. The smoothies are still working out for the fat in the morning, and I've been trying some macaroni and cheese for the afternoon/evenings. I've also been intermittently eating ice cream, cookies and various other high-fat pastries.

I'll admit, for the most part, I'm sticking to bland foods. And the upside is that because I'm not eating a lot, when I do eat, I can generally eat whatever I want!

This past week, my main complaint has been digestive issues and hemorrhoids. I'm sure you don't want to hear all the gory details, but just know, it's painful...and taking toxic medicine doesn't help matters. Other than that, I had my two-week office visit today, and Dr. Sperling said things look pretty good. The four-week office visit is the "big one" where I find out if I'm on treatment for 24 or 48 weeks. Today was more of a check-up. I'm still neutropenic, but seem to be holding my white blood cell counts at a level they deem OK.

Fatigue has been manageable. I took a walk last Sunday. We went 1.8 miles in like 2 hours. I had to stop four times for a 5-25 minute break. I thought I was going to die! Then I came home and took a two hour nap for recharge. The best way I can explain my energy is like this: Half of my energy for the day is being used to fight HCV, leaving me running on half of what I used to have....If I do something like go running in the morning (which I haven't done, but this is an example), then I'm left with that much less energy leaving me practically dead by the end of the day.

Lastly, the HIGHLIGHT of the week was that I got my "temporary disabled" parking permit today, allowing me to park just about anywhere until I graduate! Between steady weight loss and VIP parking, this treatment is looking pretty good this week.

Thanks for all your texting/emails/cards to check up on me. Even if I don't respond with much, I really do appreciate all your thoughts and prayers and crossed fingers!

Until next week, or when something major happens!

Day 8

Well, I've survived the first week, but just barely. BARELY. I took a sharp turn for the worse over the past couple days, developing just about every side effect listed in the warnings.

It started with the rash Tuesday morning, which I think I mentioned. The injection site got a little red and spread a heat-like rash all over my forearms/underarms, thighs and belly. Not particularly itchy, but I wouldn't consider it comfortable either. I went to the Dr on Tuesday morning to have them look at the rash. They considered it mild, gave me some topical stuff and I was on my way. I had labs taken that day.

Rash on my arm on Tuesday

Rash around my 1st injection site on Saturday

On Wednesday, I was battling nausea hardcore -- to the point that I was crying every time I had to eat. I'm not a small person, and I've certainly never had trouble eating, so this was an experience I can safely say, I never imagined. I mean, the thought of ice cream made me gag ...and I thought I could eat ice cream forever...I was wrong. So I went the route of smoothies and that seemed to be helping. Even though, I'm eating 60+ grams of fat per day, that's pretty much all I'm eating, so I'm dropping weight like it's my job.

My mom and I were actually concerned because I was losing weight too quickly, another concept I would have never imagined. So I've been eating smoothies for most every meal consisting of: 1/3c + 1/3 of 1/3c of coconut milk 20g, frozen fruit, orange juice and protein powder. It's actually quite delicious and rather stomachable in the wee hours of the morning accompanied by a delicate array of pills.

Wednesday was also the day the Dr called to inform me that my counts had dropped so low that I was nutropenic. Nutropenic is when you have so few white blood cells, your body can't even combat bacteria on food. My parents said I was nutropenic when I was on chemo, so they were pretty familiar with it, but they needed to brush up on their skills. In case my life wasn't already a mess, here's what nutropenic involves:

- No tampons, no shaving with a razor. (good thing I'm not also trying to pick up boys on this new fad diet, I'm trying..hah!)
- No fresh anything -- flowers, house plants, fruit, vegetables
- No touching pet feces, or any other feces for that matter (not really a problem)
- No crowded places - malls, movies, concerts, etc.
   - Not listed, but I've been wearing a very fashionable surgical mask if I decide to tread into germ-y territory
- No douching, rectal thermometers or anything up your butt (also, not a problem)
- Plus or minus a plethora of ridiculous other things that all lead back to wash your hands, stay clean, don't get anything infected and don't hang around sick people.

So anyways, I leapt off the cliff and steadily free-fell down a pit of misery for a couple days, but I'm back. I'm now taking a LOT more pills than I started with, but I'm feeling better again, and I don't burst into tears every 6 or so minutes.

Here's my pill regimen.

6am - smoothie
615am - incivek (20g of fat pill), zofran (nausea), excedrin migraine (depending on the day)
955am - eat something
10am - ribavirin, fiber pill, claritin, some sort of pain reliever
2:00pm - eat 20g
2:15pm - incivek, zofran
9:30pm - eat 20g
10pm - incivek, ribavirin, zofran, remaining pill I'm probably forgetting


At some point when I was like a sophomore in college, I had a chiropractor tell me I had the body of an 80yr old man. If I didn't believe her then, I'm certainly getting all my 'elderly' person practice in. I feel like I'm aging overnight and I literally have every elderly ailment you can think of being imposed on my body. Nevertheless, if you need some advice on getting old, I've got you, just ask. I'll be a pro here soon.

Side note: Beanie is making me one of those countdown construction paper ring chains that we used to have in elementary school. She's going to make it for 47 weeks left, and then if I'm done early we can rip the whole thing down at once. She's dedicated and knows each day is a battle so she's making a ring for every day -- and mainly we just want it to be obnoxiously long and cover my whole kitchen. (that's 329 rings, if you were wondering. -- I'll post a picture when it's done....get working bean, the people are waiting!)

That's all for now, I'm still alive with all my aches and ailments running amuck. Feel free to send me some sort of "are you alive" message every now and then if you are curious. Odds are, yes.

47 weeks left. maybe only 27.

Shot 2 is done and not making me feel quite as shitty as last week. Stay tuned.