Saturday, September 24, 2011

Aiming for nothing

It has been a long time and I decided I need to get back in the swing of things. I got some really big news right after week 4 of my treatment - I became UNDETECTED. This means that the viral load was negative and is the first step to achieving sustained viral response (SVR). If you achieve SVR for six months after your treatment has ended then you are clear of the virus and can officially declare yourself HEALED. Although the HCV has had lots of fun with my liver, clearly I am ready for the party to be over. Speaking of parties ...

A group of wonderful coworkers threw me a surprise "way to fail a test" party. It really was the sweetest, and quite possibly one of the nicest things anyone has done for me. We had some yummy goodies and a cute poem written by our resident poet laureate, and the best part, drum roll please:

Shirley Temples! Some of them had never had a Shirley Temple before but I do think they were impressed. Maybe not so impressed that they want them to be their signature drink, and some of them did or did not discuss how they would be even better with an adult beverage added, but I still think they were a hit. Seriously, I can't say enough about how nice they have all been and what great people they are. I would gladly toast a ST with this bunch any day.

As far as treatment goes, I am currently in week 11. Since this is my third go-round, I totally expected this to be easy breezy. I wish I could say that this has been the case. The addition of the Incivek has really thrown this ol' girl for a loop. Let's just say my CBC numbers are consistently low, I have been prescribed one "rescue drug" so far and this week I added an antibiotic into the mix. I also take folic acid to help keep the hemoglobin as high as possible, and diaper rash ointment has become a new best friend but I will spare you the details of all that fun. My mouth and nose bleed so much I think I should be in the next Twilight movie. Last week I even noticed I am bleeding under my toenails. Take that OPI, I have my very own shade just in time for Halloween. I am moody, weepy, sleepy, spacey, basically the seven drawfs rolled into one.

However, at the end of week 12 my love affair with Incivek will be over. I will not be sad to see it end. I will still have 36 weeks left on the other medications, but I really think it will get a little easier. They will recheck my viral load on Oct. 5. If it is still negative at that time then I will continue will the treatment. If for some reason the virus is detected then all bets are off and the treatment is stopped. So keep your fingers crossed, we are pulling for a big fat ZERO.

Before treatment, I really had intended to keep running. Oh silly, silly girl. Before treatment I thought running made me sound like an asthmatic oompa loompa, now just leaving my cube to get to the bathroom can do the same. If some of the other people that share my cube walls weren't so loud, some of the other office workers might think I have a nasty two-pack-a-day habit thanks to my lovely smokers cough. No, I don't smoke, except for the nine months in utero courtesy of my mother, it is just a side effect of the medicine that the doc calls riba cough. So the running shoes are collecting dust in the closet for now. They have been traded for a bathrobe and flip flops - which is my standard dress code when I get home in the evenings. Adam is such a lucky little fellow.

Now that you are completely caught up in the medical life of this hypochondriac, I plan to do another post soon. All of this pity party throwing reminded me of a funny story about my mother's grandparents that I want to share. It involves a blind man, a gun, and even when you think you are on the bottom you can still hit just where you are aiming (well, almost).

Monday, August 8, 2011

A Vapor

I heard a verse last week that I have never heard before -

Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:14

If I had to sum up this year, I would say this verse does an excellent job. As far as life lessons go, I have definitely been reminded that we are all just a vapor.

In April I said goodbye to someone that I admired and respected very much. He was a voice of reason, a confidant, a counselor, and a mentor. He was someone who talked me down off the ledge more than once and put up with way more nonsense than his paycheck was worth. He really was the kind of person you wanted to be when you grow up. And just like that he was gone and I miss him. Every day.

Last week a friend, you know the kind of friend you have known so long you don't remember a time in your life when you weren't friends, called to tell me her brother had died. Just like that - here today and gone the next. I was shocked. I grew up with these people. Her brother, who was a year younger than me, was gone. I thought about our childhood days and the memories we had shared. I thought about my friend and her parents and I prayed for God to give them mercy and to provide them with comfort during this time.

I also selfishly prayed that I never have to walk in her parents' shoes. I am reminded of sickness, and even death every time I go to the doctor. It is the part I hate and dread the most. I can handle the needle sticks, the icky medicine, the endless tests, but the one thing I can never get used to is seeing a parent wheeling their sick child down a hall or watching them wait for their name to be called at the lab. It breaks my heart and every time I close my eyes and pray I am never in that situation. I truly cannot imagine.

But, the truth and the reality is that life is like a vapor. We are all here one minute and gone the next. I think of my friend and can hear him laugh and sometimes I even think I can see him coming down the hall at work. I am reminded that it's not his death that I should focus on, but his wisdom and warmth he gave during his life that I should remember. I hope my friend and her parents can find a way to do the same. I have also learned to focus on what is really important in my life and to try not to get caught up in the things that don't matter.

On a much lighter note, I also decided that maybe I need to provide some instructions in case I am ever, you know, here today and gone tomorrow. Seriously, I told Adam if he had to make the plans then my final farewell would be a hot mess. Plus, since I didn't really get the wedding of my dreams, he at least owes it to me to send me off with a grand affair. I also thought I may even go ahead and write up the obit. You know if there ever was a time to brag on yourself, I dare say this would be it. Seize the moment people.

So, I am kind of thinking of something along these lines - She is survived by the luckiest man on Earth... I think Adam would agree.

Wednesday, July 27, 2011

Record breaker

Because I have been so inspired by a group of coworkers and their dedication to fitness, well, that and the fact that most of my pants no longer button, I decided to jump on the running bandwagon. It was my intention to jump into this with the heart of a champion, the strength of a fighter, you know the whole float like a butterfly, sting like a bee mentality. However, you know what they said about good intentions, it paved a road straight to somewhere and as hot as it has been I think I may have been running on the threshold.

I am about a month in and I haven't exactly been screaming I am the greatest, or swinging like the champ, instead I have been waddling, wheezing, and puffing out every move like an asthmatic Oompa Loompa. As delusional as I was before, I can tell you this has not been easy for a out of shape chunky runner wanna-be like me. It has been hard, hard work and there has been more than once that I have thought to myself forget this, I would rather be fat. For a while I even felt like I wasn't making any progress. Until this morning...

I realize this is extremely, extremely slow to you seasoned runners - I finally took my 16 minute, yes 16 minute mile and at 5:45 this a.m. I saw the number 12:58 mark my mile, I felt like Rocky on top of the stairs. Cue the music.

Although it has been a long process, I am glad I joined this train. It is a goal of mine to complete a 5k this fall. It might be a pipe dream, but I am going to keep wheezing my way through it and see what happens. As hard as it is, I really do feel better after my feeble attempts to run. I am thankful for my coworkers who have been so encouraging and have put up with my many questions and many complaints. I am inspired and hope I can be just like them one day and do five miles and live to tell about it.

So, here's to my quest to get skinny healthy. May I be able to keep the laces tied, the wheezing to a minimum and sweat through another mile tomorrow.

Tuesday, July 19, 2011

Do who??

In addition to signing your life away, and by that I really mean signing your life away, one of the many things you have to agree to before going on certain types of medication is to swear that you will not intentionally become pregnant or impregnate anyone. So after I wrote my name in blood, pinkie-sweared, spit and shook on it, I completed the necessary requirements for proving that I was aware I could not, should not, would not try to get conceive while highly medicated.

Although they want you to agree to use at least two forms of birth control I quickly explained that I have been married for a long time which really is almost the same as abstinence, and the husband had a vasectomy years ago. We came to that agreement after I agreed to grow, birth, and care for our children and in return he agreed to cut off the supply. It really was the very least he could do, but also quite possibly the most romantic thing anyone has ever done for me. I mean what says I love you more than I am willing to end my God-given right to create another human just on the off-chance that you might continue to have sex with me until we are dearly departed. Now that's love.

So after she went through the whole well-that-is-really-his-birth-control-method-not-yours speech, she said there was yet another form I could fill out stating this information. So instead of agreeing to a tubal or purchasing a chastity belt, I agreed to the form. It was quite simple and asked the basic questions. I quickly checked the appropriate boxes, signed my name once again, and handed the form to her.

She smiled and said I should have warned you about this one. You will have to scratch it out and initial here. I looked at the paper and saw that she was pointing to this question:

Same sex partner to which I selected - yes.

Duh, this was a form about my husband's vasectomy remember. Of course I have the same sex partner, otherwise that whole vasectomy thing wouldn't mean a hill of beans now would it.

She said don't worry people do it all the time, but this means same sex partner as in, you know, same gender. Now I am no doctor, but I had no idea that two women or two men for that matter could conceive. Plus, since this whole form was vasectomy-related, I had no idea lesbians even got vasectomies. Geez, what rock I have been living under? Obviously I should get out more.

I had to go home and break to Adam that I could not try to get pregnant anytime soon. I think he was relieved especially since he can no longer have children. I also had to tell him that I informed the doctor's office that I am sleeping with a woman. I think he was excited at first, but deeply disappointed when I told him that the girl I have been intimate with is, in fact, him.

On another say what note, the big C, who is now 13 and full of questions asked me if dogs could get STDs. I don't know who I should be more worried about - him or the dog.

Monday, July 18, 2011

Lucky number 3

You know what they say - the third time is a charm, but on the other hand, they also say three strikes and you're out, so I don't really know what end of the stick I will end up on this time! Thursday night I started my third attempt to treat the Hep C. I have been not-so-patiently waiting for the new medications to be approved by the FDA and in May the dream became a reality. So after much debate and a failed attempt to get into an even newer drug therapy that is still in clinical trial, I am using the Incivek triple therapy along with the Pegasys.

The last two times I went through treatment my side effects were very minimal and I really felt just fine the entire time. Unfortunately, the treatment did not work and I became known as a null responder. So, I know the odds are stacked against me, but I feel very hopeful. Three is a good number - I was born in March, I am the third daughter in my family, and of course there are the Three C's. I think it's a sign for sure.

What I did not expect this go-round, was the yucky weekend I just had. I woke up Friday just fine but by mid-afternoon I was starting to feel it and by the time I got home that evening, I was spent. Saturday started off ok, I had promised the kids we would go to a local children's museum and the mall. Plus, I was meeting an old friend that I haven't seen in way too long, so that was enough to get me motivated and out the door. Five hours, one movie, watching the kids zip line lots of times and three pairs of "toe-shoes" later, I again was totally spent. By Sunday I was much, much better and hopeful that the worst is behind me. I don't know if it was Thursday night's shot that got to me, or just the medicine getting into my system but let's just say whatever went down came out quickly.

The only other part I don't really like about this new medication is that I have to take it every 7-9 hours along with a high-fat food. I know eating ice cream in bed at 10 or 11 every night might sound not that bad to some, but believe me it has not been as fun as it sounds. Especially when the sight of food makes you gag. Not to mention the fact that I really don't want to be as big as house when this is all over. The rash that all of the other patients seem to be getting sounds lovely enough all by itself.

But hey, if I have to gain a few pounds, get a splotchy and pasty complexion, deal with a little nausea and potentially a few bald spots and end up with a virus-free, healthy liver then I'm game. Bring it on. :)

Friday, July 15, 2011

Family vacation

Recently we headed off for a little family vacation to the gulf coast. We left in good spirits, anticipating long days on the sunny shore and lots of time pool side. OK, so maybe we don't have the exact same misfortune as this family, but after six hours in the car with my bunch I did begin to think the whole family vacation thing was way overrated. Now don't get me wrong, six hours is nothing compared to the 14 hour trips I endured a child every summer during our annual trek to see the grandparents in Texas, so I really should not complain. I have told you I am the youngest of SIX, right?

While our short ride was nothing compared to all those good times, we did have several move your feet, this is my pillow, game, drink, etc., and you smell bad arguments. Not to mention the 5,000 knock-knock jokes, at least half an hour of you want to hear the most annoying sound in the world, one traffic jam, two u-turns thanks to the husband who insisted the GPS was wrong, and lots of potty breaks. My personal favorite was the gas station super gulp cup incident when the little C, who inherited his father's pea-sized bladder had to pee REALLY REALLY bad. Enter Styrofoam cup here. Yes, we did. Don't judge. We were 15 minutes away, in heavy traffic, had already made SEVERAL stops and it was raining. During the remainder of the trip the older C's kept referring to the little C as Harry from Dumb and Dumber. You remember the scene...

After all that drama we still managed to have a great time. We spent lots of time in the water:

we rode go-carts, bumper cars, kayaks, a big boat and a banana:

had a picnic bay side and got our faces painted:

saw fireworks and caught crabs (sand crabs, people, this was a family vacation not spring break):

ate lots of good food:

and just hung out: