A brand new day

December 16, 2008 at 7:46 pm (Good Day, New Beginnings, Treatment)
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Yesterday was a good day.

I met with my old doctor, Dr. M,  (or should I say new!:) and it was such an amazing experience.  He walked into the office, and he was so tickled to see me for the first time in about 8 years. I knew immediately that I had made the right decision, and that things were going to get better.

He sat down and just let me talk. I mean, he really listened. I went on for about 15 minutes, as he flipped through the 5 page document (my manifesto – heh) that I had prepared. I wanted to give him as much information as possible for his files, and he was impressed and respectful of the time that I took to write it all out for him. He wasn’t annoyed and didn’t treat me like a cheeky child.

After taking it all in, he immediately noted that my current doctor has not followed the proper protocol for my genotype. He neglected to do some basic diagnostics at the beginning, and the fact that he had started me on a reduced dose really concerned him. It was just so nice to have some of my feelings/concerns validated.

When I started treatment, I was so sick and it never occurred to me to even ask questions. One of the main procedures that I should have had prior to treatment was an endoscopy. As someone who has had hep c for 10  years, this is considered critical before initiating treatment.  Ribavarin is harsh on the stomach lining, and they usually want to make sure that there aren’t any underlying GI problems. Meh.

So lo and behold, I have an endoscopy scheduled for December 22nd. I can’t say that I am too excited about this – enough with the scary medical procedures already! But he is confident that he will know how my liver is really doing after the endoscopy. If all looks well; he won’t need to do a liver biopsy. Which, oh by the way, I should have had done instead of the sonogram that I had instead. I will say that my last liver biopsy (which was done 10 years ago) was one of he most painful things that I’ve ever endured. I’ve had babies, dental work, and all sorts of miserable things; but nothing compares to having a huge needle stabbed into your liver. Ack!

He also noted that he has found that patients with my genotype seem to benefit far more with a treatment period of 72 weeks. That would mean 8 more months from this week. I had asked my old doc about this because I had seen some of the information papers the drug company had put out, and he had just brushed me off. It’s overwhelming , but yet, it’s somehow not a surprising turn of events. We will do the proper diagnostics, and then make an educated decision.

My poor husband nearly fainted when I told him of the possibility of treatment lasting 6 more months. We’ve all been holding onto this February 27 date for so long. He is so tired, and it’s a bit like snatching a cookie out of a child’s hand.

As stressful as this possibility is, it’s just so nice to have a doctor that genuinely cares about my health.

Years ago, before Dr. M became my doctor, he had been a client when I was a young woman of 25, and a concierge in his building. When I first fell ill, he was the one that I immediately turned to. He took good care of me, and was not only my doctor, but a friend.  He remembers the girl that was very unhappy, and terrified with being diagnosed with a chronic disease at such a young age. I was in a very unhealthy relationship, and so woefully miserable. We looked at my old chart and the last time he saw me, I weighed 102 pounds.

I told him yesterday that I cannot even remember that person. He was so thrilled to see how far I have come. Since finding my mate, creating two amazing children with him, and enjoying many years of happiness; I am a different woman.

He even broke up with my old doctor for me, which I have to say was a relief. All I had to do was fill out a release of information form, and voila!, we were done. Dr. M told me that if my old doc gave me any guff, that he would take care of it.

I have to note that it’s interesting to me that leaving my current doctor kind of feels like getting out of a bad relationship. The relief that I felt as I spoke with Dr. M, was almost physical. I could feel myself taking true deep breaths -  and that old familiar friend hope was present too.

Taking back my power always does amazing things for me.

Onward and forward.

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Week 35

December 12, 2008 at 9:17 pm (Family, Fear, Treatment)
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I received word yesterday that my Procrit has finally been approved, and it will be delivered this Tuesday. Ironically enough, I have felt much better this week. But isn’t that just how it goes? Needless to say, I am going to start taking it on Tuesday in preparation for the holidays, and we’ll take it from there.

On Monday I have my appointment with my old doctor, and I am both excited and nervous. I think that I am going to have some explaining to do in order to help him understand why I don’t wish to stay with my current doc. I hate badmouthing one doctor to another, so I am trying to organize my thoughts as well as I can before my appointment. I’m glad to be seeing him before I start the rescue drugs because I can ask him as many questions as I need to, and he will tell me the truth.

I’m covered medication-wise for the next month, and this brings me great comfort. I do have a bit of fear that my current doc may be upset and try to cancel my script. My logical mind tells me that he won’t do this…I mean, he can’t. Right? It kind of goes against that whole Hippocratic oath thing if he were to do that. But humans are interesting creatures, and doctors even more so. But I will have my meds, so if  it gets ugly, I’m covered for at least a month.

This week has been a bit emotionally exhausting. Some of my dear ones are having their own physical/medical issues. I’m a bit grumpy with the Universe, but it’ll pass. I’ll wake up tomorrow, and my sweet 22 month old will look at me with her big blue eyes, and I will make peace again.

Only 13 more shots to go. Wow.

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Essential Shedding

December 8, 2008 at 11:26 am (Treatment, crochet)

Is it strange that I am slightly pleased by the fact that almost every piece of crochet that I am creating will have my hair in it?

As I wrap my hook around a piece of yarn, I can see my hair being slowly worked into my project. At first, I tried to pull the strands out – but it quickly became evident that it was a lost cause.

Somehow, it feels like I am sharing a bit of my treatment experience (and myself!) with each person that receives a crocheted gift from me.

My family has just accepted that my hair is indeed going to be everywhere!

This is my totemic offering to my clan, I suppose. :)

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Sunday

December 7, 2008 at 6:06 pm (Family, Treatment, crochet)

This weekend has not been too bad as far as my shot goes. Just the usual aches and pains that are easily dispatched by a few tablets of acetaminophen.

I worked diligently on Christmas presents, just allowing myself the luxury of crafting as the babes ran in circles around me. We had a nice weekend, even though most of it was spent inside because it is cold out there.

My dear neighbor is going to be help me get my house in order in preparation for our annual Christmas family celebration. My in-laws (being as dear as they are) are paying her to do so – so this helps all of us out. She is a super sweet lady who can rival my mother-in law as far as cleanliness goes. I know that she will come in to my home with love and respect, and this makes all of the difference in the world to me. I am not a huge fan of the corporate cleaning companies that just whoosh through your house – I always feel like I’m in the way in my own home!

So Christmas is indeed on its way; and I am so ready to be wrapped in the warmth and love that is my family.

Goodbye week whatever you are. I’m too tired to even go back and check. :)

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Hope

December 6, 2008 at 2:05 pm (Lab Results, Rescue Drugs, Treatment)
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My contact at my specialty pharmacy called me late on Friday. He promised me that he is doing everything that he can to help me get my meds. He is experienced with wrangling with my insurance company, and knows what kind of info they need to see in order to approve this kind of medication. Yay!
Let’s hope that on Monday that I receive some good news. It sure is nice to feel cautiously hopeful again.

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Sigh

December 5, 2008 at 1:40 pm (Lab Results, Rescue Drugs, Treatment)

I’d be laughing hysterically if this weren’t so ridiculous.

My insurance company is trying to deny me the rescue drugs because my hemoglobin levels are not low enough for them. Do I have to be bloodless to warrant the script? Sheesh.  I mean, seriously. My lips are the same color as my face and I sit on a heating pad all day. I feel a bit like a lizard. How anemic does one have to be, do you think?

It’s amazing that it’s so easy for some beurocratic paper pusher to make this decision about my body and my health, and thus my life.  My doctor’s office is trying to push for me, but there is a chance it may not happen.

I’d be more upset about this if I hadn’t expected them behave this way. I went through this with them at the beginning of treatment, and it took about 3 weeks of back and forth.

If  it takes that long this time around – I just may need a plasma infusion.

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Belated Thanksgiving Post

December 4, 2008 at 9:01 pm (Family, Lab Results, Treatment)
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Oh, for goodness sakes! Wouldn’t it be nice if I could actually spend some time posting about my incredible family, and how wonderful my life is, instead of my ire on Thanksgiving?I hit post earlier the other day, and I immediately realized that I totally neglected Thanksgiving….you know, the thanks part.

This is going to come out like some kind of acceptance speech, but sometimes you need to write these things down!

My husband is one of the most loyal and noble individuals that I know of. I thank the Universe every day for bringing him into my life. He has given me so much, and has a deep well of strength that is awe inspiring. He is my best friend and is a truly wonderful man.

Together, we have the gift of our children. Our babies truly complete our little family, and we are both truly amazed that we created these two incredible beings.

My sweet, sweet babies. I truly began living the day that I gave birth to M. It was as if I’d been in some sort of emotional deep freeze without knowing it. Holding her in my arms for the first time was magical, and I felt as if I could finally take a deep breath.

M’s eyes are those of an old soul – she showed up so aware. I remember looking into her eyes and knowing that this was it. This is what I’m supposed to be doing. She is an incredibly beautiful, gentle, and intense child. I am so thrilled to be able to foster these things in her and to be able to sit back and observe as she flourishes.

My dear R is my Fierce, but sweet and joyful girl baby. She does everything with such fierceness, and it can take your breath away. Whether it’s playing, running, crying, or kissing and hugging you; you’d better be prepared. I sure am glad that I gave her the strong name that I did. I look forward to watching her grow into it as she knocks her way through the Universe. I have a feeling that her lessons will be hard earned; as she is a lot like her mamma that way.

I look into her eyes, which are so much like mine, and I just know that she and I will understand one another. She is my Winter-born child.  Born so quickly that I almost didn’t make it to the birthing center. She is a force unto herself. As you walk into her room in the morning, she will without fail, roll over and give you a smile.

When my life gets hard, I imagine myself at their high school graduations. Their weddings…and maybe even childbirth or two. The future has never been so enticing.

My Mom is an incredibly strong woman who inspires me in so many ways. She’s always tried to convince me that my backbone is mighty and strong. Now that I am sure that it is; I know that the apple does not fall too far from the tree. She has shown me (by example) that one needs to always take care of their children. Even when your children are grown and old enough to take care of themselves. At the end of the day,she believes in me, as any mamma should. My eldest has inherited her flair for clothing and outgoing personality. They love to go shopping together – which is great for me, as I’m a purely utilitarian shopper. She is the crazy grandparent that I can see my children begging to go see for the summer – just so they can try to keep up with her.

My father and I have come so far. I am grateful to have his quiet understanding in my life, especially when I need a level headed opinion. I am so impressed with the human being that he has grown to be. I’m impressed with both of us. Our path together has been very hard at times, but I will always remember how he never failed to tell me that he loved me. It is so nice to be able to call him my friend. He treats both of my girls with the adoration and tenderness that I can remember from my own childhood. I love that they will get to know the mellow man that he has grown to be – much like his father was as he grew older.

My dear sister. She truly is a warrior. I look to her and I hope that one day that I will be as steady as she is. She is an intense, in your face woman – but an, oh so gentle soul. I love her dearly. Her two children and her husband are just as amazing, and my children adore them all. She feels as if she is almost half a mamma to my girls, and I know that if they ever needed anything that they could turn to her.

My husband’s family are such good people. When I married him, I gained some of the dearest people in the world.

My mother-in-law is like another mother to me. She is also one of my best friends and I speak to her daily. She understands. She truly gets me and loves me for Me. She is unfailingly supportive and truly a wonderful woman. She is also the kind of Nanna that gets up early with her grand babies, and gets down on the floor to play with them. Her grand babies mean the world to her, and I love watching them together.

My father-in-law is an older, but wiser version of my husband. He and I have always been so fond of one another, and taking his family’s name was such an honor. He’s the family technical hotline for all things mechanical, and I’m thrilled to say that he has passed on his brilliant engineering mind to my eldest. He raised 3 boys, so watching him with his grand babies is so sweet. They have him wrapped around their pinkies, and he doesn’t mind a bit.

My two BIL’s are each awesome in their own right, and M and R have two more doting menfolk to wrap around their other pinky.

So hear me, Universe, as I give thanks for all that I have. I wouldn’t change any of it for the world.

I am blessed beyond belief. I am grateful. I am rGentle wise oneelieved.

Mischievious Joyful One

I never could have imagined that things would turn out so well.

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Rescue Me!

December 1, 2008 at 4:21 pm (Good Day, Lab Results, Treatment)
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I staged a sit in at my doctor’s office this morning. I sat there for 20 minutes before the receptionist called me up front and handed me my lab results from 11/19. My docs PA had assumed that was why I was there. I looked down at the low, low numbers and just stared at the poor guy. I asked him why my doctor had not called me back yet, when I have been leaving messages since last Tuesday?? He asked me to wait and came back and said that my chart had been on his desk since last Tuesday, and that he wouldn’t be in the office on Wednesday. WHAT?

I took a deep breath and calmly pointed out my ridiculously low hemoglobin level, and said, “I CANNOT wait until Wednesday. I’ve been waiting for a week already, and this is NOT OK!” The poor receptionist apologized and I walked out of there as frustrated as I had walked in.

Then I went next door and had more labs drawn – because at this point I have no idea where my numbers are truly at.

Then I walked in the door and my doc called – as if on cue. He asked me how I was feeling, and I said, “horrible, I would like the procrit as soon as possible, please”. And he said, “alrighty.  I’ll get my PA to call the specialty pharmacy, and we’ll get the ball rolling.” I asked him why it took him almost a week to call me back, and he acted as if he had not heard me. Whatever. Moving on.

The bottom line is that I am going to get the Procrit, and just maybe I can begin to start to feel better and engage in my life more.

AND! This morning I made an appointment with the doc that diagnosed me many moons ago. He’s a long drive away, but he’s a good guy and he always listened to me. My old doc was also always up to speed on recent treatments, and if he didn’t know the answer to something, he researched it. I called it a second opinion when I called my Primary today, and I’ve already obtained the referral. Go me!

Even though I only have 3 months left on treatment, the thought of dealing with my current doc for the remaining time does not make me happy.  I want someone who is going to be a partner in my health care – not someone with whom I end up feeling that I am ‘bothering’ when I call their office.

I have a Thanksgiving post that is coming, and it doesn’t include any grumpiness or bitching. I honestly don’t like being in such a bad mood – this has been emotionally exhausting and I’m ready to put a positive foot forward.

Just calling my old doc and getting my prescription today has made a huge difference in how I feel. Taking back my power has always the best cure for frustration in my world.

Here’s to the next few weeks being good ones!

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