Dóchas

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 that I wished they had played last night:

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

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.

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 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.

I did my 11th injection Friday night! One more down, and ever so much closer to success.

Last week’s shot was hard on me. Saturday was not too rough, but come Sunday, every bone in my body ached. My energy level was not up to par until Wednesday or so. The worst part was that the interferon seemed to pick another place in my body to harass each day. One day it was my knee caps, the next my elbows, and then finally my lower spine. It was not too much fun.

So come Friday, I was nervous about how my shot was going to affect me. I woke up yesterday achy and tired. I had to keep a steady dose of acetaminophen going in order to be able to function. Today I feel better - here’s to it continuing this way.

I’ve not been on the computer too much this past week. My beloved HP decided it doesn’t want to hold a charge, and the fan was overheating again - so back to Best Buy it went for rehab. I’m trying not to be bitter about it, but I am extremely frustrated with my luck with computers. This laptop was purchased in February, and this will be the second time it has been back for repair. At least the girls and I will be out of town for the two weeks that they said it would take to repair.

We are leaving on Monday to go to Georgia for two weeks, and I’ve so much to do! Packing for the three of us for two weeks takes a lot of planning, and I’m a bit nervous about getting it all done. The trip includes a 10 hour car ride - so this must be planned for as well. Thank goodness for portable DVD players and a sister who has raised two children of her own. She understands what traveling with small children entails.

My husband is going to have two weeks on his own. I imagine that the first week will be a nice break for him, and that he will begin to miss us by the second. I know that I will be anxious to get home myself. I don’t like being away from him for that long, and the girls are going to miss their daddy.

By the time I return, I will be on shot number 14. I will be going for my 3 month pcr check mid July - I am so excited to see the absence of any viral load!

One more down!

Tonight was the first time that my big girl witnessed me giving myself the shot. My boy was out, so there really was no way around it. There is just no way to keep an inquisitive almost 4 year old away when you really need them to scram. She was amazingly okay with it all. She asked a few questions, but she was more concerned about whether or not I was going to use her Scooby bandaids! We had another discussion about how the medicine is going into my body and giving my mean old virus a knuckle sandwich. She found it hilarious that there are warring factions in her mamma’s body. Indeed.

In a way I am happy that she knows about the shot aspect of it. I mean, it is going to be a part of our lives for a bit, so she may as well not be fearful of it. The sharps container is bright red and awfully neat looking to her - so we had another conversation about transmission and universal precautions. Who knows what she understood - but it would have been remiss of me not to speak of it.

This week I have suffered mouth ulcers and a very painful right ear. The ulcers are very far back in my mouth, by my tonsils, and on the roof of my mouth. I think that I may possibly have ulcers in my ear canal as well. I am going to have to make an appointment with my Primary so that we can see exactly what is going on here. If it is going to happen weekly, I must figure out what it is and how to treat it. I suffered all week and it was no fun.

I need to note for posterity that after doing my shot tonight, my mouth almost immediately broke out in ulcers and my ear (which had finally quit hurting) flared right back up. It’s curious, but it is most likely due to my immune system being suppressed by the interferon.

I’m off to do some reiki with hopes of alleviating these symptoms.

How can it be that I am 36 years old today? Here it is - I really must acknowledge that I am sliding into middle age. How odd and surreal.

I remember when birthdays were exciting and something to anticipate. Now, it’s just another year that flew by and a few more wrinkles. How sad that the older we get, that the urge to celebrate our birth fades. I must think on this and get back to truly celebrating another year on Earth.

My personal goals for this year are vast. I need to go about figuring out where I stand in this great big old cosmos. I feel my life goals shifting and changing, and I am excited. But this means continuing to work on myself. I want to be the best parent and wife possible. But most of all, I want to live. Really live. No more fear of what may be. Just taking each day as the gift that it is.

This is me choosing to live the rest of my life in the moment. The past no longer has a hold on my future. I will start tomorrow, the second day of my 36th year, even more determined to create my own reality.

This year is full of potential, I can feel it in my bones.

“With the realization of ones own potential and self-confidence in ones ability, one can build a better world. According to my own experience, self-confidence is very important. That sort of confidence is not a blind one; it is an awareness of ones own potential. On that basis, human beings can transform themselves by increasing the good qualities and reducing the negative qualities.”
His Holiness the Dalai Lama

I met with my doctor today for the first time since I’ve started treatment. As I was getting ready for my appointment, I looked in the mirror and caught a glimpse of what a healthy me looks like. I have color in my cheeks and my eyes are brighter than they have been in a long while.

I remember how the doc had told me (more than a few times) during our first appointment of just how sick I was going to become. He was right - it has been a tough road. My ass has been kicked many times over by these drugs, but I am learning more about these poisons as each day passes. I am sure that the next 40 weeks will hold many surprises and ups and downs - but I am not afraid.

Today I was able to walk into his office looking better than I have in a long time. He was pleased by my weight and progress. My numbers indicate that the drugs are indeed kicking some hepatitis virus ass. He even said that he would not be surprised if I showed up undetectable when we check at 12 weeks. He then cautioned me about getting too excited if this does happen. Sustained viral response (SVR) can only be achieved when you have cleared the virus for 6 months after treatment. I assured him that I have complete confidence that the drugs are working, and anything other than a SVR just isn’t going to happen. He laughed at my bravado, and said that my attitude alone gives him a lot of confidence. It was a good appointment, and I walked out there even more determined to kick this virus’ ass.

And my lab results did indeed come back looking better than they were two weeks ago. I am excited to see a positive trend here! I will continue to visualize happy, fluffy red blood cells that are full of oxygen. My white blood cell count is a bit pesky; but I am working on them. I posted my new labs over in the side bar for reference.

My reiki practice continues to grow every day. The hour or so that I spend self-treating every night has become my favorite part of the day. I’ve never been able to meditate too well, but I am learning slowly how to quiet my mind. Focusing on my body and the flow of reiki puts me into a beautifully relaxed state. Could it be that I just may finally be able to meditate after trying for so many years?

I will close this post by reiterating this. I am not afraid.

Hrm, I think that this journal is going to become a reiki journal in conjunction with journaling about my treatment. I don’t think that I am capable of it being any other way. I’m in a brand new place emotionally, energetically, and physically. And being that this journal is about my treatment, and reiki will now be an integral part of it, it only seems right to include it.

It’s so amazing to me; I knew, but I didn’t know what I knew. There has always been something out there that I have been looking for. Learning to self heal has changed me irrevocably. My life now has a new path that includes a proactive, spiritually enhancing thing!

I suppose I am all starry eyed. How often does one truly find what they are looking for? It is so similar to how I felt when I realized that being a mamma was an important part of my path. Amazed! Excited! In awe. Scared. But strangely content and assured that it is as it should be.

I feel the energy running in me, around me, and through me. I wake up every day feeling as if I have the best present to unwrap. I cannot believe that this gift is not going anywhere. I will have it forever, and what I do with it will affect my existence. And those around me will also be affected positively. This just has to be one of the most exciting aspects for me.

I can finally heal! And I can do so in a manner that will not drain me, but that will instead enrich my existence as I receive the reiki energy back. I’m just in awe.

How can I ever begin to thank my dear friend who gifted me this attunement? How can I begin to explain?

I will be calling her this week - but something tells me that she just may already know.

The household plague has jumped me after all. I woke up yesterday feeling as if my sinuses were gripped in a vise and my energy level was down again. I spent most of the day in the easy chair, trying to work on myself with some reiki. My boy was sweet and took care of M so I could take myself off to bed early. I did reiki on myself for about an hour last night, and I was able to get a good night’s sleep.

I woke up today with it in my lungs. This is not good - I have an unfortunate history with pneumonia and lung issues. It’s that familiar consumptive feeling - fainty and breathless as I go about my business. I will have to pay very close attention to my lungs over the next few days. I really, really don’t want to end up with pneumonia. I will be staying very close to home for the next few weeks, hoping to avoid any more germs.

I do my 9th injection tonight. I have hopes that the interferon will get in there and help me kick this crud.

My family is recovering slowly. M has a bit of a cough still, but otherwise, she seems fine. C is still not feeling too great. This is unusual for him, he has a strong immune system and can usually fight off things quickly. This worries me - if I do indeed have the same thing, it could be really bad. I intend on doing my shot and going straight to bed again tonight.

Tomorrow I must get up and get my labs drawn, regardless of how I feel. I never leave home without my hand sanitizer, but I do hate going into places like that when I am already ill.

I have my 2 month appointment with my GI doc next week, and I want to have all of the necessary data. I still have high hopes that my lab results are going to come back looking better.

Today is my wonderful husband’s birthday. We are officially sliding into middle age together. Heh. I can hardly wrap my head around the fact that we are both on the downside of our 30’s! Neither of us feel our age, and he certainly does not look his. I could have passed for younger before having two babies in rapid succession. Ah well, so worth it.

Last night I marveled at the fact that we have spent the past 10 years together. It has gone by so quickly in some ways, and in others, it feels like another lifetime when we began dating. I was 26 and he was 27! That seems so incredibly young now. So naive and unknowing of what responsibility is really about.

We have survived so many trials together. This new trial - my treatment - is one that will shape all of us. I know this. We are undergoing treatment as a family ultimately.

I want my husband to be able to look back upon this time and remember the incredible love in our house. Despite how difficult things have been, and most likely will continue to be, I want him to remember…

The way his baby girl cries when he leaves the room. How she will grasp him about his legs, begging to be picked up. R in all of her glory, waddling around the living room, as she begins to walk. And how could he forget her fierce screams that bring all of us to quick attention?

The way that M remembers everything that he tells her when they are in the garden. M in her wellies, harassing the chickens in the back yard. The way that she reflects his own heritage back at him with her beautiful brown eyes. And the pancake breakfasts that have become a tradition of theirs, with M eating half of her body weight in bacon.

I want him to remember that despite how difficult life has been at times, he has never failed to be a wonderful father.

I will remember the mornings that he rolled out of the bed, muttering, “It’s time to go make the donuts”. The darkness outside speaking to how early it is. How he continues to take such good care of his family, even when it’s discouraging, and the work to money ratio just doesn’t match up. The feeling of security that he brings me. Our love.

I look forward to many more years together. It truly has been a grand adventure.