I Survived!

Today, at 10 PM EST, I take my very last dose of Ribavirin and finish my treatment for Hepatitis C. They say time flies when you are having fun. I can now state, from experience, that the opposite is also true; time crawls when you are not having the least bit of fun. 

This has been the longest almost year of my life. I have gained weight, lost weight and gained it back again. I have broken out in several rashes and had the worst acne of my life. I have woken up in the middle of the night soaking wet from sweating and freezing. I have been beyond tired; I have felt hung-over despite my total lack of drinking. I have been in pain. My hair has fallen out. I have had several attacks of all encompassing rage, and I have lost most of my motivation to do anything even remotely fun. In short, this year has just been a bucket of fun.

But I survived. It is over. My weight will stabilize, my skin will calm down, the fevers will stop, my energy will return, the aches and pains will lessen, my happy, fun personality will make a comeback, I will care again and my hair will grow back. In short, I will be the person I have always been. A person I recognize.

The diagnosis of this disease was a tough thing to swallow. I spent about three months crying; feeling tainted and convinced that I was going to die. I have my husband to thank for getting me through it, and for not letting me feel too bad for myself. He has a way of making me laugh even when I don't want to, which is annoying when I am mad at him, but pretty awesome when I am a crying mess. 

People have told me this entire time how strong I have been; but the truth is, I never would have made it through this without the family and friends who took me to doctor's appointments, gave me my shots, cleaned my house, hugged me, took care of me, made me laugh, loved me long-distance, supported and encouraged me.

The key to surviving treatment for Hepatitis C is not in the vitamins you take, or how much water you drink, or even how much rest you get. The key is to surround yourself with good people who will be there for you through every hard day and then celebrate with you when it ends.

Also, you'll need Super Grover. Everything is easier with a cuddly blue monster on your side.

Perks of Triple Therapy

As of Friday, August 02, I have 8 more weeks of treatment to go. My Dad calls it a drop in the bucket, and I suppose he is right compared to what I have already been through. However, if he were in my shoes, I am sure the prospect of 8 more injections of what is essentially poison, wouldn’t exactly thrill him. I am still testing negative, and at this point, my chances of being cured are very good.

Now that I am in the home stretch, I have had time to reflect on my treatment as a whole. I have realized that despite all the terrible side effects, treatment wasn’t all bad. In fact, there have actually been a few perks. Since most bloggers who talk about the side effects of triple therapy tend to focus on the negative (and as a result, scare the crap out of those who are starting treatment), I thought I would take the opposite approach and talk about the perks to being on triple therapy.

For the first 12 weeks, you have to eat the kind of foods most adults avoid; and you don’t have to feel guilty about it because you are actually helping your body by eating them. These foods include, but are not limited to: Bagels with an obscene amount of cream cheese, ice cream, chocolate, French fries, deluxe burgers, cheesecake, chocolate, and my personal favorite, cheese.

For the next part of treatment you get to experience weight loss, without trying. Once your 12 week gorge fest is over with, you will have gained a fair amount of weight. But fear not my friends, for that weight, and then some, is going to fall right off. It is going to disappear even if you attend a graduation party and gorge yourself on brownies. Because of this, you are going to need new pants; which, conveniently, is part of the next perk. (Men might not see this as much of a perk, sorry fellas.)

Losing weight and needing new pants means one thing: SHOPPING! Just like the first perk, gorging yourself on yummy food, you cannot feel guilty about this one either. After all, one can’t exactly go around with their pants falling down, unless they are a fifteen year old boy, and even that is not advisable.

Your hair will fall out. I know, at first this seems like a negative, but one day you will notice that it is not just the hair on your head falling out; your body hair is going too. Goodbye shaving, hello smooth skin.

Lastly, you have a built in excuse to take a nap, whenever the mood strikes. If someone has the nerve to question you, give them a full on guilt trip. Sleep is important when fighting a virus, ask Grandma.

So here I am, model thin, my legs smooth as a newborn’s bottom, having made it through almost every terrible side effect that this treatment can throw at me. I hope to be one of the last to receive triple therapy as there are new, less difficult, treatments on the horizon. But if you, or someone you know, are embarking on this journey, know that the end will come and nothing is ever as bad as you imagined it to be.

Week 12 Treatment Results and a Plea for Patience

01/29/13 

HEPATITIS C VIRUS RNA BY POLYMERASE CHAIN REACTION(PCR),

QUANTITATIVE, SERUM OR PLASMA

RESULT: HCV RNA NOT DETECTED

Does everyone know what this means? It means I am kicking ass and Taking names that what is means. As of January, 29th there is no trace of the Hepatitis C Virus in my blood!

(Pauses for cheers and applause)

Of course it’s not that easy. I still have 35 more weeks of treatment, and in that time the virus has to stay gone. If it is still gone 6 months after treatment ends then I am considered cured. That will happen. It is only a matter of time.

Since my last update, in which I balled my fists and declared that I was done with the pity party, I’ve totally intended on filling this blog with other things besides my Hep C updates, Things like:

• My college roommate is getting married and made me her maid of honor. (Turns out being in a wedding is more stressful to me then planning my own.)
• The other day some shoe salesman with a broken arm thought asking me “What happened?” was a totally appropriate conversation starter,
• I wanted to post my acceptance story in honor of national acceptance day which was January 20th
• And I have finished two new quilts

Clearly I have failed at all of this because these as hard as I am knocking Hep C out the meds are knocking me out. I am still so tired, I am winded and I ache. My brain has turned into that of a goldfish. I am swimming in circles; I have a five second memory. If I don’t do something the second I think of it; it just slips into oblivion until I make another lap.

The difference between this update in the last one is that now I know that none of that matters, because right now, this treatment is working. All these side effects have been worth it and I have to believe that what the doctors are saying is true: that it’s all downhill from here. I can see the light at the end of the tunnel folks and I am in a much better place.

I know this blog has meant something to people and that means the world to me. I have no intention of stopping. I hope, in time that I will feel good enough for regular updates again, until then I hope that you all can hang in there and that you have all like my Facebook page where I continue to post at least a little more regularly.

Hepatitis C Treatment Update #2

So I got my test result yesterday, the ones that let me know whether or not treatment is working. It is working but it’s taking the long way around. Let me try to explain. When I first started treatment my viral load was in the 636,000 range as of yesterday it was 17. That sounds awesome, but where I was really hoping to be was 0 or not detected. Being not detected would have meant that the virus was gone from my system and that I had only about 19 more weeks of treatment.

Where the doctors wanted me to be at yesterday was not detected or >12. Being at 17 is higher than what anybody wanted, but it is low enough to say that treatment is working, and that I will continue treatment for about 43 more weeks. If at the 24 week mark my viral load is not at 0 or if my viral load is above 100 at my 12 week check then treatment will stop because it is not working.

This all means that treatment is working for now, but we don’t know if it is going to cure me. It also means that if everything goes well, I have 43 more weeks of treatment, which is 43 weeks of feeling like shit. I really do feel awful. I told my friend yesterday that it was like being 100 and going through puberty at the same time.

My joints ache all the time, especially now that winter has started. I normally have joint pain because of my CP, but the medicine are exacerbating the pain and sometimes my hips hurt so bad that even sitting causes pain. It takes me FOREVER to do anything. I was no racehorse before all this; but now, I am like earth rotatingly slow. As in you can only tell I am moving by charting the sun, taking time-lapse video, or creating some complicated pendulum experiment. My grandma could beat me in a footrace and she is in her nineties. My mind is in a fog. The other day I came home from work, fed Taden went to the bathroom, let Taden in and then tried to feed her again. I saw the food in her bowl and realized I had already fed her, but had to struggle before I remembered doing it. It was actually a little scary. Mostly, I am just having a lot more of those, “why did I come in here?” moments than usual. All I ever want to do is sleep. I crave sleep the way children crave their Halloween candy and the way smokers crave that cigarette. I need it, and I need it now or life as I know it will come crumbling down. Give me sleep or give me death and all that mumbo jumbo. On top of all that, my face looks like it got hit by truck containing the hormones of a dozen thirteen-year-olds and I am in a perpetual state of annoyance. Just talking to me at this point may elicit an eye roll or a heavy sigh.

So I am training my husband for life in retirement as well as life with a teenager. I am not quite sure how much he can take. He is stressed out and short tempered and not sure how to fix it. Of course he is thinking big. He already wants to find a house that’s easier, or move us back to the main level both of which I refuse because moving creates more stress and that first level room with its drafts and hard wood floors is too hard on my poor little old lady joints.

43 weeks as a long time. And then we have to wait 6 months to find out if it’s really gone. I will be nearly 32 then and the first 2 and a half years of my marriage will be over. Aren’t the first few years supposed to be the best? I feel cheated. I wanted to be a mother by now. I wanted us to be happily-ever-after, but instead here we sit in limbo, waiting. To say this is not fair is an understatement, but it is also completely useless, and so I will try to stay positive. Even though all I really want to do is throw the mother of all tantrums. I will keep trucking and I will try to smile even when I don’t want to. What else is there to do? At least treatment is working, at least the symptoms are not worse, at least my system isn’t tanking under all these medicine. At least I am still (mostly) sane.

At least, as always, I still have my amazing family and friends to support me through this.

Hepatitis C Treatment Update #1

I am currently working on a post about inspiration, but the words are not coming easily today. This happens. So instead, I thought some of you might want a little update on how Treatment is going. I am going to be pretty candid here, because I want to give a full picture of what treatment is like, so some of this might be over share. Just a warning.

For those of you that don’t know, I am on what they call “triple therapy”. This consists of a weekly injection of interferon; Telaprevir which I take three times a day; and Ribavirin which I take two times a day. In short, it is a crap load of medicine.  It has to be taken at very specific times and with certain foods. I take the Interferon on Fridays around 10 PM. Tom has been doing the injecting, and boy am I glad I didn’t marry a sissy. With the Interferon, I usually take Tylenol and Benadryl to prevent a fever and any allergic reaction. I take the Teleprevir at 7:00 a.m., 2:00 p.m., and 10:00 p.m.. Teleprevir has to be taken with 15-20 grams (or more) of fat so I try my best to consume lower fat foods for both lunch and dinner. The Ribavirin is taken twice a day at 7:00 a.m. and 7:00 p.m. with food.

Needless to say, I am eating a crap load of food. As of Friday, I have decided to bring stretch pants back. It's gonna be so hot. Thankfully, it's winter and bulky comfy sweaters are my best friend normally this time of year.

For the first four days of treatment I had no side effects. I actually started to feel like maybe I had this in the bag. Then, on the night before my first day back at work (and two nights before a trip to Traverse City for a work related conference), I developed a rash. It wasn’t any big thing. I took a dose of Benadryl at night, got a prescription for a topical cream and it went away. I was still able to attend the conference.

But since then, the party has really started; and by party I mean that embarrassing one your parents threw you at Chuck E. Cheese when you were certainly too old and definitely too cool. Or your Aunt Marjorie’s retirement party where everyone commented on what a woman you were becoming while your cousins made a game out of snapping your bra. Yeah, that party.

After my second shot of interferon, I experienced a fever as well as some fatigue and muscle weakness. I think these were made worse by C.P. Both Saturday and Sunday, I could not stand for longer than ten minutes without feeling extremely fatigued. By Monday, that had improved and I am noticing that if I force myself to get moving I can get the metal fatigue to clear pretty quickly. However there is a fine line. If I try to do too much, which for me seems to be more than a half an hour of physical activity at a time. I am completely wrecked. My legs shake and my arms burn with the effort of keeping me upright. On Friday I burst into tears mid-sentence while Tom and I were on our way to get my blood drawn, alarmed he asked what was wrong. I said. "I am just so tired." I cried for thirty seconds then sucked it up. Tom made me giggle saying "You can doooooo it." And reminded me that I was tough, I had this, and it was small potatoes compared to everything else I've been through.

When I am not dying of exhaustion, I simply can't sleep. Last night, I got two hours before Tom got up to pee and I was up for the rest of the night. It is frustrating. 
I either have chills, or I am sweating. Sometimes my body can't decided and I do both at once.

Now, because I am a sexy beast, I have added hemorrhoids to my list of side effects. Let me tell you, if you ever need to be humbled, hemorrhoids will help you get there with a quickness. Not only is it embarrassing to admit to, they are painful. The kind of painful that makes you want to punch someone in the face.

I am also irritable, and have developed either a rash or acne all over my face. I have never experienced skin this bad in my entire life. So in short, I'm fat, irritable, emotional, weak, tired, covered in zits and it hurts to poop. It's a good thing I already got the wedding out of the way. I am pretty sure that for better or worse, in sickness and in health covers ugly.

My first blood draw was Friday. I am hoping that my viral loads have dropped and that all these awesomely wonderful side effects mean that my body is kicking some serious Hepatitis C ass.