Field Notes

February 20, 2009 at 8:27 pm (Continuation, Family, Treatment)

I just did my 47th injection. 47!! Next Friday would have been the end of my treatment had I stayed with my old doc. I’m not sad at all. I’m amazed and proud as hell that we have made it this far. Today finds me feeling so much healthier (oddly enough) than I felt 10 months ago. I’m going to list some of my thoughts about my  treatment thus far for posterity.

  • My liver is no longer sick.  I know this to be true, and I can feel it deep down in my bones that this virus will stay away once my treatment is over.
  • I have been virus-free since July of last year – which is just amazing to me! On this note; I cannot believe that I lived for so long with a sick liver. Yes, it was sicker at some times than others, but still, I was always fighting the virus.
  • I’ve lost 20 pounds over the past 10 months. A slow trickle of weight falling off of my bones that kind of made itself very much known over the past few months. I look in the mirror and I can see a shadow of the old me – the me that weighed 102 pounds sopping wet in my 20’s. And what’s really validating for me is that I don’t like it. I don’t want to be this thin. I want to be the healthy weight of 130 once treatment is over, as this seems to be where my body goes when all is well.
  • And even though the side effects of the drugs stink, I’m Living! I play with my children. I spend time with my boy.
  • And what’s really cool, is that I have found an even deeper sense of self worth/love over these past months. I was already on my way there before this all began, but making the decision to love and respect my body the way it deserves has been a profound thing for me.
  • My reiki attunement in June changed my life. Truly. This in itself deserves another entry. I will just say that my ability to heal myself and my dear ones is phenomenal.
  • My love for my family and friends, both extended and near, has deepened. I have been the recipient of so much love and support. I am completely blown away by the generosity of my fellow man.
  • When I am healed, I am going on a serious quest to find out exactly what it is that I am to do with all of this new found beauty and knowledge.
  • My path is showing itself to me and I am so excited!!
  • I am married to the love of my life. I wake up every single day and look at him in wonder. How is it that after all of the stumbling around I did that I found this amazing man? His grace and unfailing love for me throughout all of this is epic. I am speechless most days, because how does one properly say thank you? He is truly an exceptional human being.  I hope that he will be able to go back and read these words and be reminded.
  • My babies have kept me going.
  • My big girl has grown into this person. She’s 4.5 at this writing.  She is strong willed, smart as a whip, and ALIVE! Thankfully she still needs her mamma’s hugs and love. I think that it is safe to say that we have formed an even stronger bond over the past year. She is a caretaker too, and thrives on helping me do things – she’ll fetch a diaper for R, or even get me a glass of water. As of late; she wakes up and makes herself some toast and grabs some milk – all without waking us up.  I am in awe.
  • My baby girl is now 2. The past year has brought stressful moments regarding her health and development. I worry about her, but we are dealing with her particular issues as they arrise. Her personality is huge! And she too is ALIVE! She smiles more than any kid I’ve ever met, and loves her Daddy with a fierceness that I hope will not ever go away. I just taught her to sign ‘I Love You’, and she slays me when she signs it. So sweet, that baby of mine.
  • Watching them grow is akin to watching clay turn into a pot as the wheel turns. The evolution is pretty damn impressive, and I am so honored to be able to bear witness.

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It’s Done

February 12, 2009 at 12:57 pm (Treatment)
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My tooth was pulled out this morning without much fanfare. I won’t say that it was pleasant. There was an issue of my temporary apparatus getting delivered to the wrong branch of my oral surgeon’s office. I was prepared to just have them pull it and scare my children by being a toothless mamma all weekend – but I have the best husband in the Universe, and he dragged both babies with him to pick up my partial and delivered it to the oral surgeon’s office himself. The partial was stuck right into the empty space where my tooth had been, and it hurts like a bitch. But I am dealing and actually taking pain meds. I don’t have ANY energy to be tough here.

On another note; I hope that you all find someone out there that treats you as well as my husband treats me. When this is all over, I have to figure out something really special to do for him. Any thoughts?

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Not Excited

February 11, 2009 at 11:16 am (Lab Results, Treatment)

I go in tomorrow to have my tooth pulled. To compound my anxiety; I’ve been sick with a stomach bug since last Friday. This doesn’t help as far as fighting infection goes, and my wbc count is indeed low, coming in at 2.4. I’m trying so hard not to stress about scary things such as; gee, I hope their equipment is super sterile. Gee, I hope the tech isn’t sick tomorrow. Gee, I hope I don’t end up with sepsis.

When I emailed my Gi to ask if he’d prescribe an antibiotic, he refused. He doesn’t want to have to deal with this aspect of my health care…which I understand, he’s not a GP, and it’s outside of his purview. I won’t deny that I wish that he would put his two cents in here; but alas, it is what it is. I’ve a call into my dentist for a preemptive antibiotic.

I realize that this train of thought is horrible and unhealthy. But I have to acknowledge my fears or I will end up having a panic attack in the chair tomorrow.

As it is; I’m a mess today. My kids are running amok after being sick and cooped up all weekend. My patience is terrible, and I just want to crawl into my bed and have a good cry. At least M goes to school today and hopefully the babe will sleep. Then I shall watch some horrible Sex In the City episodes, which somehow always make me feel better.

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Oops

February 6, 2009 at 8:41 pm (Continuation, Lab Results, Treatment)

I stepped away from my blog for awhile – it wasn’t intentional, I swear. I blame Facebook, really I do. In the past month I have reconnected with my best friend from grammar school, my best 3 pals from junior high, and so on. Frankly, it’s amazing, this whole Facebook phenomenon. I resisted joining – I’ve never been so great at joining things. But! I did join, and it’s been all kinds of fun.

I need some fun right now. My treatment is wearing upon me physically in new and different ways. My boy and I went to see Dr. M together on the 20th of January, and it was officially decided that I will continue treatment until July. Dr. M ran a viral load check in December, and I’m still clear! He feels strongly that a year of being virus-free will be the most beneficial course of treatment for me. Since I cleared the virus in July – July will make it a year for me. I’m surprisingly okay with this. My boy was also okay with our decision, and felt very secure with Dr. M’s reasoning.

Annoyingly enough, not 2 days after deciding to continue treatment; I snapped a crown off of one of my front teeth. The dental damage from treatment all of a sudden made itself very well known. All of the ‘rightness’ I felt about continuing went out the window as I struggled to find a dentist to treat me (So frustrating!). My teeth are literally disintegrating in my head. I have all of these gorgeous (and expensive) crowns that are being rendered useless. I’ve seriously spent over 40 hours in the dental chair over the past 10 years. I kid you not. The dentist wanted me to go and get a root canal on this poor broken tooth, and I just explained to her that I am so very done. Just get me through the next 5 months of treatment, please. So I go to have it pulled next week, and I will wear a false tooth/flipper thingie until treatment is over. And once my body has healed a bit from these evil toxins, I shall get myself the best damn pair of dentures known to man. No looking back. I am tired of spending money on teeth that are as tired as I am.

I’m not excited about getting a front tooth pulled. I initially cried and got mad at the Universe when it first happened – but now, I’m just ready for it to be over. I’m trying very hard to put my dental situation in its proper place in my head. It’s just another blip in the world of treatment.

A few more side effects have emerged that are nearly driving me mad. My skin has finally given up the ghost of not being affected by the ribavarin. I itch constantly, and things like shaving my underarms and wearing underwear all of sudden have become intolerable. And my eyes are dry and itchy as if I’ve been standing in a wind tunnel. Annoying, yes. Life threatening…nope.

On a happy note; I chopped my hair off into a longish pixie, and I couldn’t be happier about it. Again, one less thing to worry about. I feel a lot lighter and it’s so easy to put it into a headband on the days that I don’t feel like doing anything with it.

My husband continues to be a beautiful source of strength and optimism for me. He reminds me, whenever I need to hear it, that the light at the end of the tunnel is there. I love him so, and I don’t even know how I could manage this without him. I’m so glad that I don’t have to.

My baby just turned 2, and with the joy that came with her birthday, I felt a bit poignant about the fact that I have been ill for most of her life. I know that she won’t remember. I also know that she will some day hear the story of what we went through as a family together, and know that we survived.

We are survivors.

Ok, this got a bit melancholy…blech.

I have to end this with a bit of serendipity and synchronicity that struck me tonight. As I was giving myself my 45th shot tonight, I was thinking about the month of July. The 7th month of the year…the month I was originally due with M….gads, so far away. And as I pushed the plunger into my stomach, the clock above me struck 7. You know; those gorgeous bongs that only an antique clock can make. And as I usually do after a shot, I turned to my Good Earth Chai Tea, and the message on the paper on the tea bag told me this; “Wait for the wisest council of them all. Time”. And I laughed and sighed a bit at the same time. Okay, my dear Universe. I get it. Patience.

I’m lucky that I have the best company in the world to wait with me.

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