less than four weeks left!

With March 9th swiftly approaching, my spirits are steadily increasing! (not to mention my counts have been up a bit, so that helps too)

I just spent a weekend in Denver with Richard (my cousin), and I was able to enjoy the winter wonderland perfectly. I had to nap and such, but other than that all went well. I was concerned that because of the anemia + altitude that I'd keel over and die...but I didnt! There were a couple times when it was 10 degrees and we were walking that I had trouble breathing, but other than that I was A-OK.

I cant wait to go back and visit when I'm not panting and falling asleep at every turn. Denver is a lovely city.

The day when it was 10 degrees, I decided to wear an ear warmer headband rather than a hat. As it turns out, having hair on your head actually keeps you warmer....and since I'm a little light these days, my feathery wisps were blowing around on top of my head making my crown extremely cold...who knew.

In other news, I have one bottle of pills, three interferons and five neupogens left. Yayyy!!!!

My biggest complaint these days, other than exhaustion, is mental cloudiness. My brain just stops working sometimes and that gets really old, really fast. 

That's all for this week. Stay tuned.

come onnnnn march 9th!

Sorry it's been so long since I last blogged, but I've been feeling pretty mediocre and I didnt really have a lot to say. But now that I'm back in school, I'm ready to start blogging again!

First and foremost, I finished the 20g of fat medicine -- thank god! -- no more smoothies, cheese, avocado, nuts, peanut butter, or fried stuff - woo! Dec 16th was a glorious day and will be forever marked in my calendar as a holiday!

Secondly, since about Thanksgiving (week 10 or so), my hair has been falling out. While it's hard for anyone that doesnt see me every day to notice, I've lost probably about 2/3 - 3/4 of my head of hair. It's a good thing I had a TON to begin with.

If you've never had all your hair fall out before here are some of the benefits:

- constant tickling from the phantom hair under your arm
- a perpetual drain stopper from hair balls = similar to a spa pedicure when you're standing in the shower
- really hip, funky fresh bald spots (i'm trying to start a trend...i think it will really catch on)
- you get to dig out that old barbie comb you used to use when you were little, because you cant use a brush
- you can finally achieve that coveted - straight-as-a-board-absolutely-no-volume-whatsover look
- your washing machine lovingly ties hair bows onto all your underwear, wrapping them like little furry presents
- you can practice your magician skills because you can ALWAYS pull giant hair balls out of your sleeve
- everyone around you gets a stylish new outfit made exclusively of your hair
- tingly-minty-fresh shampoo that makes you feel like your rubbing toothpaste in your hair but costs 1000% more
- and finally you get to relive the glory days when you were 0 - 12 months old and everyone used to comment on the incredible softness of your wispy, thin baby hairs

When expressing my initial shock to the doctor, she kindly said --
"Well, at least it's winter, I swear there's some really cute hats! No really, go buy yourself some hats."

Thanks a lot. (little does she know that hats on a balding head feel like a crown of thorns)

(she was just trying to be nice, but losing all your hair is a touchy subject....)

My main issue in recent times has been dealing with the doctors/pharmacists/phlebotomists.

Here's a brief rundown --

Bloodwork problems.

Every week for the five weeks I was home, I got to call and remind my doctor's office to

a) send my lab request to the tampa lab
b) send my lab request to the tampa lab
c) please call me with the results so i know whether to take the neupogen (dependent on my bloodwork)
d) again, please call me with the results
e) remind them to please send the lab request to the tampa lab

All of that being said, sometimes it got there, sometimes it didnt and weeks later, I'm still waiting on some old lab results -- cool.

Pharmacy Problems.

Finished incivek treatment, new meds came to my house in tampa just fine...shockingly.

Another month of meds was also scheduled to come to tampa before i left to come back to austin. the pharmacist said she needed to talk to me about my prescriptions before she could send them out (now come on lady, we've been doing this for 4 months...)

Here's how the conversation went --
"Hi Marina, I need to discuss the medications you're taking with you"
"OK sure"
"What do you need by this week?"
"Just the interferon, I have a lot left of the ribavirin"
"OK well, I'll send that out today, but we're having trouble getting authorization for some of your meds"
"OK?"
"What about the incivek?"
"What do you mean what about it? I don't take that anymore."
"YOU JUST STOPPED TAKING THE MEDICATION? DID YOU CONSULT YOUR DOCTOR? WHY WOULD YOU DO THAT?!!!"
"Um, well, it was a 12 week treatment? You didnt send it to me last month? I don't know?"
" Oh, well I'll have to talk to your doctor about that."

doctor phone call to tell me that the pharmacy faxed in a request for ribavirin and they were changing my prescription to 800 mg rather than 1200mg

package arrives. no incivek. shots and 1200mg ribavirin pack?

Pharmacist calls me to inform me that the insurance will not cover another month of incivek for me because it was only a twelve week treatment. (OH YEAH?! WHO KNEW?! jerk.)

I inform her that she sent me the old ribavirin pack -- at which point i can hear a tremor in her voice as she realizes that she sent me thousands of dollars in meds i wont take -- I told her i hadnt opened it and agree to send it back.

New ribavirin arrives in texas. old ribavirin goes back to the crazy pharmacy.

Pharmacy Billing Problems. 

pharmacy billing department calls to get a new cc on file because the old is declined. Mom gives them the new medical reimbursement card number.

pharmacy billing department calls to get a new cc on file because the old one and the new one are declined. i give them the amex.

lady informs me that i have a balance of 40 dollars. i ask from what? oh, because your cc never went through each month....
 ( now wait a second, every month they call asking if its ok to bill the credit card on file. and every month, i say yes. wouldnt you think it would have been important to mention during month 2 or 3 or 4 that the card has been declined prior to continue sending me tens of thousands of dollars of medication each month...i mean come on people!!)

pharmacy billing department calls to get the copay for the new ribavirin they are sending out. i inform her, im not paying it because it was their fault they didnt wait for the new prescription from the doctor before sending me the wrong meds. luckily she agrees.

Doctors office problems


- I only get return phone calls on the 1st of never.

Health Problems

When I finished the Incivek, I was able to stop taking the nausea medicine because I had simultaneously decreased my ribavirin dosage from 1200mg to 600mg because I was too anemic. Now that my red blood cell counts are back up, they increased the dosage to 800mg. Since they increased it, I went from one pill once a day, to two pills twice a day, making me nauseous again, so I started taking the nausea medicine again.

I still can't walk very far without getting winded.
The dark circles under my eyes are darkening with every passing day.
I am so pale I could be mistaken for a vampire at any given moment.
My skin is so sensitive that everything makes me itch, or burns, or makes a scaly patch.
Still can't really eat any raw vegetables/fruits/meats (though I've been eating some vegetables immediately after i take the neupogen because i know my counts will be up right then)


Other than that, I'm hanging in there. Overall, I don't feel that bad just tired a lot and I have spells where I feel like death. Only 6 weeks left! I'm done March 9th! Woo hoo!

I'll do better at keeping you guys posted. Sorry!

Keep me in your thoughts and prayers!

Until next week...


A fun tidbit: The other day I burped after I took my ribavirin and it blasted sweet flaming toxic waste bile up my throat and into my nose. I felt as though I had incorrectly used my neti pot with sulfuric acid.  And that I was ready to morph into a dragon at any second and breathe fire all over my living room....lucky meeeee!

Subs, Salads, Sushi -- oh my!

GOOD NEWS!! This past week, my neutrophils went up to 7600!! HIGHER THAN WHEN I STARTED TREATMENT. This meant that I could indulge in all the fresh/raw vegetables and undercooked meat I wanted. The doctor also said that I could rub someone else's snot on my face, but I stuck with lettuce on my sandwich instead. This is a HUGE small victory for me. I went from eating tons of vegetables to my only vegetables being french fries, and while everyone can justify a couple potatoes in some french fries, I'm kind of over it. (GASP!)

My very first shred of lettuce since treatment started :) Thank you Jimmy Johns for delivering so fast! 

Anyways, so this week has been pretty good. I got to skip my doses of Neupogen on Friday and today, and wait to see what this week's blood work says. (cross your fingers...) My hemoglobin level is still 8.5 which is really low -- meaning I'm still anemic -- but the doctor said that as long as it stays above 8, and I'm not incapacitated they probably won't do anything. If it drops lower, I could need to take ANOTHER shot called Procrit (i think) which is basically the same as the neupogen but for hemoglobin.

On another note, when I went to get my blood work drawn this past week, the phlebotomist asked if i was alive because he couldn't find any veins. They stuck me....not once, not TWICE but FIVE times...twice in the same vein. Needless to say, they couldn't draw enough blood so I had to go back on Wednesday morning. I worked really hard Tuesday night to drink loads of water, so the blood came out easy-peasy on Wednesday morning.

I also got a festive care package this week from Aunt Patty -- yummmmgobblegobbleyummm -- 

Turkey Cookies!

My mom got here friday and she's been dutifully taking care of me and helping get my life reassembled. I don't have enough energy to file papers and stuff so the medical paraphernalia is piling up! This Thanksgiving will be atypical with very small dishes of a bunch of different things because I'm not sure what I'll like to eat.

Anyways, that's it for this week...cross your fingers all my counts stay the same.

It's great to be on Week 8!!

It feels good to be 2/3 of the way done with the first half of treatment! It's been a tumultuous ride so far, but there seems to be a method to the madness.

This week I found out that my ANC (neutrophils/white blood count) didn't go up (still 588) from the Neupogen last week, so now I have to be on a regimen  of MWF neupogen shots. In addition to my Thursday night Interferon, I'll admit, this blows. Not to mention, my Hemoglobin dropped below 9, so now I'm severely neutropenic and anemic...fun.

2 weeks worth of Neupogen. jealous?!

The doctor said that we'll watch the hemoglobin to see if it goes up this week, and if not, I might need to reduce dosage of the Ribavirin. I'm not particularly sure of the implications of dosage reduction this far into the treatment, so we'll see. I also might need some iron supplements or something.

So basically I feel like I just ran up two flights of stairs anytime I move. (ex: when I get up from a chair, lay down in bed, bend over to pick something up, cough, etc.) And my heart's generally racing at all other times too, not to mention I feel like I've been hit by a bus at least 85% of the time.

My interferon shots have been hurting more, and I cant really explain why, except that maybe there's a higher concentration of interferon in my leg there since I've given 8 shots (4 in each leg). They sting now, and they didn't used to do that.

The Neupogen shots have been going in my stomach. They aren't that bad, except the needle is a lot bigger. There's a lot less involved with the Neupogen  since it's already assembled and there's not all the clicking and stuff that I have to do for the Interferon redi-pen.

The third Neupogen shot was better than the 1st but worse than the 2nd. I think the bone pain is directly proportionate to how tired I am when I give the shot. This week, I accidentally forgot to take aleve when I gave the Interferon Thursday night, so I felt like hell on Friday for the Neupogen...I know, I got too cocky because I was so excited to be on Week 8!

In terms of eating, I was kind of nauseous today, but this has been the first day in a long time. I'm still doing the smoothies in the morning, and various assortments of french fries, pizza, grilled cheese, etc. throughout the day for my 20g of fat. ONLY FIVE MORE WEEKS OF INCIVEK!! WOOO!!

Other than all that, this week has been pretty smooth. I'd appreciate a break every now and then from the Hep C gods, but apparently this week wasn't it. I go to the Dr for my Wk 8 checkup on Thursday, and bloodwork on Tuesday.

Thanks for all your thoughts/prayers/good vibes! Mom's coming on Friday!

All's good on the homefront

So sorry I didn't post last week, but my week was pretty much a nonevent in terms of the health things...which is a good event! Aunt Mary Beth came to visit last weekend and we had a grand ol' time touring Austin and shopping/eating around various parts of the city. She really wanted to try food from a trailer.

Aunt Mary Beth at Hey Cupcake! with her Halloween cupcake

She also made me loads of delicious soup which I've been eating since the cold front has moved in! Speaking of cold, the winter weather has spurred lots of shopping in Lindsey and I, so we've been getting packages in the mail daily -- though she's still waiting for her new fancy iPhone 4s! 

Some of the arriving packages have been pills, which as exciting as that seems, is just not. I have one more shot this month and then I have to go through the special pharmacy debacle which last month consisted of -- the pills not arriving on time, the pills arriving almost 48 hours late at like 930pm, the ice pack having exploded in the cooler and covering all the outrageously expensive prescriptions in icepack gel, and all the pills sitting in water/gel substance -- surprisingly, nothing was damaged and the pills have been functioning normally. Since then, CVS Specialty pharmacy has been delivering my other meds, they seem to be doing a MUCH better job than the other pharmacy (except for the picture below)

Last time I checked, a 90 day prescription shouldn't come in 90 different bottles! 

I had to take the Neupogen this past week, though not the week before...so I'm curious to see if it's going to be an every other week thing. This past week my ANC level was the lowest it's been at 561 -- 500 is when I move to "severe neutropenia", so I really hope it doesn't drop much lower. I took the Neupogen at night this time, and it proved to be MUCH better/easier/less painful. 

My regular interferon shot was more painful and left a little bruise, so I think I might have hit a blood vessel or vein or something...not sure about that. 

I've probably eaten McDonalds about 15 times in the past two weeks (pretty much once a day, but some days twice). I've also come to terms with the fact that everything tastes weird, so mostly foods with very distinctive tastes taste the best -- so I made chili and green chile cornbread to accompany my extra salty french fries! 

Oh! also this week I experienced something new. I burned my mouth eating some hushpuppies last weekend, I think. Because I'm neutropenic, my mouth proceeded to heal in slow-motion. It got all these white scabby things where it got burned, then peeled off everywhere, then had some soft pink tissue and is now back to normal -- but it took like four or five days! I can honestly say in my 24 and a half years of life, I've never had my skin in my mouth peel off quite life that. 

Other than that, everything's been pretty good. I've taken lots of naps and tried to sleep as much as possible because that proves to make things much better for me. I also spent a bunch of money stocking my pill box back up with all the OTC drugs that complement my delivery/designer drugs! 

That's it for this week!

Thanks so much Talleys and Coopers for the care packages :) Lindsey, Bean and I have been eating like queens with all the goodies that are either made for us or sent to us! (and we're still taking donations!)

Mom's coming back out to Austin for turkey day so that should be fun! 

Until next week!

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...