Week 15 Labs

July 31, 2008 at 8:15 am (Lab Results, Treatment)
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This week has been a good one so far. I woke up Monday and was able to get up and run errands with M in tow, which gave us some nice time together. I am so grateful when I can wake up and go about my normal activities, and I’m not falling down tired by the end of the day.

I went and had my labs drawn, and experienced (for the second time) a vein collapse at the draw site. I’m lucky – the lovely tech at the lab is kind and uses pediatric needles because my veins are tiny. He did his thing, I accepted my Garfield band-aid, and M and I went about our way. By the time we got to the car, I had blood dripping down my arm and my band-aid was a goner. Thank goodness for baby wipes with alcohol in them! Poor M was not pleased to have to give up her own Garfield band-aid so that I wouldn’t bleed all over the car. Ah well, a box of Hello Kitty band-aids made her feel better, and I now have backups in the car. Cute backups, at that.

I’m told this the vein issue is pretty common while doing a chemo-type drug. I’m lucky in that I don’t have to take my interferon intravenously, I can only imagine how much more difficult things are for those who do. Add this to the list of questions for my GI; what are my options if we run out of veins that work? Having to have blood work done twice a month for the next 8 months or so is just part of my life, so we’ll just have to figure it out.

I received my labs back today and things are holding steady – I posted an new link in the side bar. They said that even though my numbers are still low, it’s to be expected, and they are not worried. I think that I am starting to get used to the breathlessness that the anemia causes. Again, I am struck by the similarities between treatment and pregnancy. I guess after two pregnancies and the ensuing discomforts, I’m just kind of used to be physically uncomfortable.

I did post a jpeg of the glorious graph that I received that shows my PCR results. I think I just may have it framed! It represents hope, determination, and good old fashioned piss and vinegar to me. My back in strong, and my will is even more so.

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Sunday, Bloody Sunday

July 27, 2008 at 11:33 am (Treatment)
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It’s a blatant ripoff from an U2 song – but it’s how I’m starting to feel about Sundays as of late. I know from experience now that I will wake up and my skeleton will hurt and my energy will be for crap. I know this is how it’s going to be. So I crawl out of bed, my joints feeling like I’m 80 years old, and I pop my pills and try to get moving.  Hoping my one precious cup of coffee will provide me with much needed energy.

And yet, I still find myself getting frustrated as I look around my house. The unwashed laundry, dust bunnies, and general disaray seem to mock me. Once my tylenol and coffe have kicked in, I jump up and try to get stuff done. Then I have to sit back down because I’ve worked myself into feeling terrible. Wash. Rinse. Repeat. Yeah, I know. I’m a bit of a dumbass. Oh but hey, I’m a stubborn dumbass, at least.

My sweet husband takes one look at me and demands that I sit down. Then he takes our eldest up for her nap, and I’m left here on the sofa feeling grateful.  But more than a bit ineffectual too. I know, I know. Wahhhh.

The wise Buddha said, “The greatest patience is humility.” This treatment and the path that I must take to succeed is indeed humbling. But as one does with gestating a baby, you just wait and try to imagine the beautiful gift at the end of the long road.

I am humbled daily by the lessons that I am learning from this disease and treatment. How is it that I ever took my existence for granted? I’ve been given the opportunity to look at my life in a way that many don’t have to. You don’t know how much you want to live until your life is threatened. Yes, it’s extremely cliche’ – but damn if it’s not true.

Next year this time, I will be hep free. And my bloody Sundays will be a distant memory that will remind me to appreciate each breath that I take.

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Misc/Week #15

July 25, 2008 at 6:45 pm (Treatment)

This week has flown by – I cannot believe that I will be taking care of shot number 15 tomorrow. I am officially a third of the way done with my treatment. Getting the news that I’m undetectable makes me giddy with excitement. Oh, how lovely it is to be validated. Ha.

It’s midsummer already, and my big girl will be celebrating her 4th birthday on the 4th! Time has really become fluid – how is it that I have a 4 year old already? And how is it that she thinks she is going on 12 and is already telling me what to do? We were driving down the road the other day, and I was digging through my bag looking for some lip balm. She was very upset with me, and informed me that I should be driving. Oh, and please quit going through my bag. Oh my, how we are in for a beating come the teen years.

My best girlfriend in the world is coming for a visit today. She and I have not seen one another since last October, making this the longest it’s ever been. L is my sage. Not a thing gets by her, and she truly sees me and loves me regardless. :) She is also my cohort, and we have many hijinks in our past that would make Lucy and Ethel proud. She’s the friend that everyone should have in their lifetime. I have missed her terribly, and spending time with her always leaves me smiling.

Let’s see…side effect wise this week has not been too bad. My hair continues to fall out – a lot.  I will confess that it is starting to alarm me a bit. It just happening so fast, and I’m starting to wonder just how much will fall out. My hair doesn’t look any different to anyone else but me – so there is that. Sunday and Monday were a bit rough around the edges. I powered through, and by Tuesday I felt like a human being again.

I will say that I am starting to notice some neurological things the first few days after I take my shot. I feel twitchy at the base of my skull, and there seems to be bit of a sparky feeling in my limbs. Weird. I have been using reiki to help it pass, but it does concern me. I will not be Dr. Googling that one, for sure. I’ll keep an eye on it and bring it up when I have my appointment in August with my GI.

So hey, other than shedding like a long-haired puppy and feeling a bit like I’ve had 20 cups of coffee, all is well. :)

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Undetectable!

July 21, 2008 at 7:59 pm (Good Day, Lab Results, Treatment)
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Today I found out that my hep c virus/viral load test came back as undetectable. I repeat, as of July 15th, my body no longer seems to be playing hostess with the mostess to the hepatitis c virus.

On April 18th, my viral load was 9,350,000 and it is now listed as >10. The graph that came with my lab results has to one of the coolest things I’ve ever seen. This line started up at the top of the page in the 10,000,000 range and ended waaaay down at the bottom of the graph in the >10 section. Yup.

I’m not out of the woods yet, but this is just awesome news, and so validating. Sustained Viral Response can only be called once I clear the 6 months post-treatment PCR. People do relapse after treatment ends…

I know in my heart of hearts that this virus and I have parted ways.  I feel different. I feel lighter. It is just not an option for it to come back.

These past 3.5 months have been hard. But I feel like I can look at my husband (over the next 8.5 months) and honestly say, “Just hold on”, and have a leg to stand on. The proof is here – my body is responding to the treatment!

I also need to reiterate that I realize that I am incredibly blessed to have the friends and family in my life that I do. I thank the Universe every day that I have come this far.

So I will continue doing what I am doing – with the beautiful image of our lives without hepatitis in mind.

This has been a good day.

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Week #14

July 18, 2008 at 7:38 pm (Lab Results, Treatment)
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I’m happy to put one more week behind me. Shot number 14 was done under the watchful eyes of my eldest child – she actually requested to watch. I just kind of shrugged my shoulders and so it was. It’s a part of our lives and I’d like for her to not be afraid of my treatment.

My labs came back today looking much better than they did two weeks ago. So much so that the doctor’s office hadn’t even bothered to call me with any concerns. Woo hoo! I’m so relieved that I don’t have to contend with a dose reduction and the possible ensuing battle. I’ve started a regimen of wheat grass this week – hoping it will help my hemoglobin counts. The hep c community swears by the stuff, and I’m open to anything that will help. It does taste rather nasty, though.

Last night was my big night out to go see the Indigo Girls. I was joined by my sweet neighbor (who loves music as much as I do), and we had a blast. We left early and had a nice dinner before the show. The venue was one of my all time favorites; the Wolftrap Filene Center. Time and time again, I have the best experiences there. We had rear orchestra seats, so we could actually see the stage and what was going on. Very cool.

Hearing them live was bliss for me. I am amazed by the timeless quality of their words. It’s pure poetry, put together by two women who truly desire growth and change. I found myself crying at the pure joy of being there. I love how I am constantly reminded that I must take every beautiful moment in time and cherish it. I appreciate these mental taps, especially when I’ve been feeling a bit down. It was like a balm for my stressed out soul – and I found myself in a much better place upon leaving. It was everything that I needed and expected it to be. Oh, and OH! I have to say that the way that Emily Sailers said, “Thanks, ya’ll” after every applause just warmed my deep down southern heart.

The only downside was that about 45 minutes before the show ended, I began to feel very nauseous and woozy. Thankfully I had an anti-nausea pill on me, but the hour or so drive home was bit long. I went to bed at 12:30 this morning feeling very achy and ill.  I tossed and turned all night, and upon waking up today, I decided that I most likely contracted a bit of food poisoning. Damn pesky white blood cell count making me super susceptible to the creepy crawlies out there. This morning was not pleasant and I spent most of today in bed, just woozy and head sore.

My sweet boy stepped up and took care of our babes so that I could rest. I hate days that I am unable to fully function as their mamma – but I am confident that next year by this time it will be a different story.

Here’s to yet another week that I was able to live my life to the fullest despite these poisons coursing through my veins.

Here is the link to one of my favorite Indigo Girl’s songs. I wished they had played it last night:

This song makes me think of my babies and my sweet boy.

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Melancholy and Anticipation

July 16, 2008 at 3:30 pm (Treatment)
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Yesterday I went to get my 3 month PCR blood work done. The results will be very telling, and ultimately they will determine the course of my treatment. I am confident that my viral load is going to be negligible if not undetectable. It will take about 10 days to get the results back – so I am trying to not worry about it and just keep on doing what I’ve been doing.

I am curious to see what my bi-weekly labs are going to look like this time around. I am trying very hard to stay positive about the anemia – but I have to admit that I am feeling more than a bit worn down.

Emotionally, I am finding that I am starting to do a bit of a mental dance with the chemicals coursing through my system. My patience is not what it used to be; things like my children’s cries and the TV being too loud can make me want to jump out of my skin. It feels frighteningly very much like I felt when I was suffering my postpartum depression. ::Sigh::

I’m struggling to not feel defeated by this particular set of side effects. I had an appointment with my meds doc yesterday, and I was very honest with her about how I’m feeling. I asked her if my anemia could be contributing to this mental funk I seem to be in. She was not sure – so this will be another question that I will have to ask my GI doc. She is at the ready to prescribe another antidepressant if need be. I cannot AND I will not, allow myself to go down into the depths of melancholy without a serious fight. My main issue is that I don’t want to be on any other antidepressant than wellbutrin. It brings me such mental clarity, and  SSRI drugs just seem to counteract it. Eh, we’ll figure it out.

My hair has began to thin out over the past few weeks. Oddly, this doesn’t freak me out too much. It’s just hair, and it does grow back. Thankfully I’ve a thick head of it, so I’ve a bit to spare before it becomes obvious.

The side effects change weekly and I’m just trying to go with the flow. Some days I’m so very positive, and others (like today), I feel more than a bit down. Welcome to the roller coaster ride that is Hep C treatment.

I guess I just need to remind myself that this treatment is hard. Actually, it kind of sucks. Toughing it out is what I must do – through the good days and the bad.

I feel the need to end this woeful post on a happy note. My children are healthy and joyously happy to be alive. My mate and best friend is traveling this path with me with as much grace as humanly possible. My extended family members continue to rally and offer words of support. I am not alone. Oh, and I am still not afraid.

This is me sticking my tongue out at my poisons. ;)

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So Tired!

July 14, 2008 at 7:40 pm (Treatment)
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The girls and I arrived home from my sister’s very, very late last night/ early this morning. What was to be a 5 hour travel day turned into a 12 hour ordeal (thanks to bad weather) – but hot damn, we are home. Sleeping in my own bed last night was glorious, and my boy was kind enough to get up with the girls so that I could sleep in this morning. I missed him terribly to say the least.

Spending time with my family down south was a good thing. As the years pass, my sister and I are finally beginning to concentrate on what we have in common instead of what we don’t. I love our rambling conversations that end up with us realizing just how much we don’t know about one another. Yet, we know each other better than many others in our lives know us. Odd, how that works out. We found ourselves comparing our childhood experiences and memories a lot. I’ve found it to be very healing and informative to hear her perspectives. She is an amazingly strong woman that many find tough and abrasive – but she has the biggest heart and means well. Her tenderness with my babies will forever be something that I will remember. I am proud to call her my sister.

My brother-in-law has known me since I was 16, and has watched me struggle, survive, fight, and conquer many things over the years. I suspect that he is happy to see that motherhood fits me, and is pleased to have two nieces to smooch to boot.  M and R thinking that he hangs the moon doesn’t hurt either.

My sister and I both married very nice people. Here, here for marrying nice people!

And then there are my two, sweet, sweet nephews. They managed to be wonderfully patient and dear to their cousins, despite the undeniable angst of their teen aged years compelling them to be indifferent. My eldest has a mad weak spot for her cousins, and her preschool aged indifference to their teen aged indifference, balanced it all out. Heh. Mostly, the girls had a blast swimming, eating, coloring, and generally being spoiled rotten. It was exactly what they both needed.

M was able to attend a camp at the local community center for a week. It was a big deal for her, as she was gone from 9-3 every day. She was able to learn to swim and played with her peers with abandon. She came home each day exhausted and happy.

I spent a lot of quality time with my dear R. She is at that delicious 18 month old age that is so much fun. It does however include the not so fun, separation anxiety phase. A new place and schedule, and bam, we had one fussy and needy baby. It was ok though, we bonded over popcicles and snuggles. I’m cherishing this age – soon she will be running after her sister and cuddles will be a thing of the past.

We also took R to see two different orthopedic doctors while we were there, and we finally have a diagnosis regarding her hip/walking issues. Thankfully it is something that can be corrected with behavior modification (she does this weird frog sitting thing) and time. I was seriously afraid that they were going to have to brace her or some such thing. I am so relieved.

The first week that we were there I received news that my labs have crashed. I’m officially anemic in such a manner that my doc is talking about reducing my ribavarin dose. I am completely against doing this, and I was pretty vocal about it. They’ve done studies and the efficacy rate goes down about 15% if the dose gets reduced this early in treatment. He is nervous about starting me on the rescue drugs so early. I am pretty adamant that I am given the opportunity to try the rescue meds. I will go to get my labs done tomorrow and we will go from there. The doc muttered something about my being extremely stubborn and a fighter, and I was all, “DAMN RIGHT!”  This is a take no prisoners situation for me, and I will fight for the most effective care possible.

The anemia symptoms are pretty annoying. I cannot carry my children up stairs without pausing to breathe and rest. I also have this nagging pain in between my shoulder blades that tells me that my lungs are not too happy either. My 12 hour travel experience yesterday left me feeling like I’ve been run over by a bus. I would be pleased as punch to have a modicum of energy back, albeit drug induced.

It’s time to come up with a new treatment plan. I sure hope my doctor is on board with this, I really do not want to have to find another doctor at this junction.

On a happy note; I am so glad to be back. So incredibly glad to be back by my boy’s side, wrapped in the comfort that is our home.

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