4 Months?

October 29, 2008 at 2:06 pm (Family, Treatment)
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What is it about this 6 month mark, with the end so close in sight, that makes it so much harder? The end being in sight is a Good Thing. Having the end in sight means that my family and I will get our lives back from this treatment. Soon. And I am so excited and ready.

But I am also weary and so frustrated with my growing list of limitations. My sweet boy keeps reminding me, 4 more months, honey. And I want to scream and throw a tantrum like R, because all of a sudden, 4 months seems like a lifetime.

It reminds me of when I was in labor with M, and after 24 hours of labor, the doula leaned over and said, “It’s time to get the epidural, honey”. She and I had an agreement that she would only suggest drugs when she sincerely felt like it was absolutely necessary.

All of a sudden, every ounce of resolve I had to go drug-less just went whoosh out of the room, and I couldn’t wait for that man to stick that damn needle in my spine. It’s amazing how our personal resolve can get us through painful situations. I was amazed at the change in my resolve; it happened so, quickly.

The past 6 months have been so hard. My husband is so tired. And even though he is a strong, strong man, I worry about him. The Lion’s Share is huge some days.

It’s like you hold on, and you hold on, and then the end in sight makes the holding on harder. What the heck is that all about?

Maybe the 6 month mark is a common place to be where I’m at emotionally. I really dont’ go looking about the hep c boards much anymore. I find that my own experience is quite enough, and that I am too much of an empath to be able to participate in a healthy manner.

I fell yesterday while I was vacuuming – right in front of my two children. They both climbed on top of me, and were obviously worried about their mamma. These are the parts that I hate. Then I had to push my babes off of me so that I could get to the loo in time to vomit. Vertigo just sucks. This left me incapacitated for the rest of the evening. Good times.

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Then my 4 year old woke up today and pretended to be sick. I’m terrified that she is going to think that being sick is glamorous. You do get tons of attention, and people are nice to you, and stuff. I don’t want to raise a hypochondriac!

When she finally confessed that she was not really ill; I asked her why she was pretending to be so. She said, I get to sit in your lap, get reiki, and you’re nice to me. And I felt terrible. Is this what my child has to do in order to get the attention that she needs right now?

I told her that she could ask for reiki whenever she wanted it. And if she wants to sit in my lap; just ask. And that nothing in this world was more important than her. Not the laptop, the crochet , or whatever else it was that I happen to be doing.

I hope that I got through to her. I also said, “Being sick stinks, honey. Look at me. Look at how your pasta dinner last night had all sorts of mamma’s hair in it!” She laughed. And said, “You do look pretty awful, mamma.” Gotta love toddler’s and their honesty.

So this is where I am today. Tomorrrow will most likely be better. If it’s not; well then….I’m going to just eat as much ice cream as I need to until I feel better.

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Moving forward

October 24, 2008 at 1:05 pm (Treatment)
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All bravado aside; I just made the appointment for my MRI’s, and it was really hard to pick up the phone and make that call. It just makes it all seem so much more real.

I was immediately reminded of a quote from the old movie Rosemary’s Baby, “Pain, be gone, I will have no more of thee!”

I say this now to fear.

Fear be gone, I will have no more of thee.

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A Rare Political Post

October 23, 2008 at 2:53 pm (Uncategorized)
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I’ve been sitting here listening to the Pink song “Dear Mr. President” all afternoon, crying my eyeballs out. The lyrics are gut wrenching and bring every fear that I have to the surface.

I voted yesterday, via absentee ballot. God, I hope that my chosen candidate is able to actually make some changes. I am so afraid for our planet. I am so afraid for our children. But mostly, I am pissed.

Dear Mr president Lyrics

Dear Mister President
Come take a walk with me (take a walk with me)
Let’s pretend we’re just two people and
You’re not better than me
I’d like to ask you some questions if we can speak honestly

What do you feel when you see all the homeless on the street?
Who do you pray for at night before you go to sleep?
What do you feel when you look in the mirror?
Are you proud?

How do you sleep while the rest of us cry?
How do you dream when a mother has no chance to say goodbye?
How do you walk with your head held high?
Can you even look me in the eye?
And tell me why

Dear Mister President
Were you a lonely boy? (Were you a lonely boy?)
Are you a lonely boy? (Are you a lonely boy?)
How can you say
No child is left behind?
We’re not dumb and we’re not blind
They’re all sitting in your cells
While you pave the road to hell

What kind of father would take his own daughter’s rights away?
And what kind of father might hate his own daughter if she were gay?

I can only imagine what the first lady has to say
You’ve come a long way from whiskey and cocaine

How do you sleep while the rest of us cry?
How do you dream when a mother has no chance to say goodbye?
How do you walk with your head held high?
Can you even look me in the eye?

Let me tell you ’bout hard work
Minimum wage with a baby on the way
Let me tell you ’bout hard work
Rebuilding your house after the bombs took them away
Let me tell you ’bout hard work
Building a bed out of a cardboard box
Let me tell you ’bout hard work
Hard work
Hard work
You don’t know nothing ’bout hard work
Hard work
Hard work Oh

How do you sleep at night?
How do you walk with your head held high?

Dear Mister President
You’d never take a walk with me

Would you?

Go watch and be prepared to be moved:

http://www.youtube.com/watch?v=4eRApNHSRRk

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Neurological Fun and Hello, Week #26

October 23, 2008 at 2:18 pm (Treatment)
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Things in my world have been intense and crazy busy over the past few weeks. We continue to valiantly fight the ever invading germies from M’s pre-k petri-dish. Last week C, M, and R all came down with a really nasty cold. I mean, it was terrible. It actually made C take to the bed, which almost never happens!

I have to say that as evil as the antiviral drug that I am on is; it seems to help me fight off respiratory things. Thank Goodness! So needless to say, it was a long week of snot, kids who didn’t go to school, and mammas and daddies who are starting to consider homeschooling to not be a bad idea. :) I am so weary of the constant illness. Thankfully it was a fast moving virus, and we are now just dealing with the residual cough and such.

They have finally started wiping the kid’s hands down with antibacterial solution at snack time, and in between when they utilize the different play areas at M’s school. Thank goodness! I thought I was going to have to go in there and look like an OCD cleaning madwoman, and demand that they start doing this! Enough is enough – there are just basic things that need to be done when you have a whole bunch of children playing together. Anyhoo. Here’s to M’s immune system rallying and the rest of us following suit.

About last week’s shot….it was scary. As I have noted; over the past few months I have been experiencing a host of different neurological side effects almost immediately post injection. Last weekend was one of the worst ones that I’ve had in a while. After taking my injection, my balance just went all wonky, and my spinal pain kicked in. I took the usual pills to help, and toddled off to bed with my heating pad. Saturday I woke up with spinal pain that just took my breath away.

As the day progressed, my head started to ache and I was just useless. Sunday; even worse. And then a new and even scarier side effect emerged. I found that all of a sudden I was having a hard time getting my words out. I felt like I was going to have a seizure all day, with my brain feeling like it had a bad case of the hiccups.  It was terrifying – but I steadfastly made myself stay off of the internet so I wouldn’t terrify myself even more. It stunk. And then on Monday, the migraine arrived and hung out for two days. Bah.

I cannot sing enough praises for the good old fashioned heating pad!

Thankfully, I had my 6 month check up with my GI doc and the neurologist yesterday. It was a long day, but it left me feeling like my medical team is finally starting to hear me.

My GI doc was pleased with my numbers – not so much with my weight loss….but hey, you can’t have it all. He agreed that all of these symptoms are worrisome, and that there is obviously something going on. It was so nice to finally have him look me in the eye and acknowledge that I know my body. He declined to run the 6 month viral load test on me – he said that if it was gone at 12 weeks, then it’s gone. We won’t know about sustained viral response for up to 6 months post treatment. I refuse to even allow that option to be present in my life. It’s gone, and it is NOT allowed to come back.

Then off to the neuro I went, with my list of symptoms and concerns all typed up, ready to argue my case if need be. No need; he was a lovely, calm and cool collected man, who was intent upon listening to me. He has worked with patients on alpha and beta interferons, and is well aware of the ickiness and side effects of them. He also had a a few choice words to say about the antiviral drug, ribavirin and it’s side effects. Ah, sweet, sweet, sweet validation. To have him look at me and say, “Hey, good job on surviving this for 6 months”, was just awesome. I think I wanted to crawl into his lap and hug him at that point. Hee hee.

He did the usual neuro checks on me, and that was all normal. Leading him to casually say, “well, at least you don’t seem to have a brain tumor.” Um, I guess that is neurologist humor??  I did laugh, because, yeah…no brain tumors, please.

He ordered brain and cervical spine MRI’s, with and without contrast. So I suppose I will be having 4 MRIs in the near future. Eeeep. He said that he did not think that he would find anything, but that he did want to rule out lesions, and pre-MS signs. Interferons can suppress your immune system so much that other auto-immune diseases sneak in. The spinal pain and the speech issues concern him the most.

Then he pragmatically said, “if we don’t find anything, can you live with this for the next four months?”  I laughed and said, hey, if I can deal with 10 months worth of colicky babies – eh, I can deal. He gave me some prescriptions to help me get through the pain ( I LOVE THIS MAN!), and I will be going to get those MRIs soon.

My gut tells me that I don’t have brain lesions or pre-MS. I don’t feel something that deep is going on…..I really do think that the Wellbutrin and the Interferon just really don’t like each other. They both raise the seizure threshold, and I think that they are fighting for dominance. I also personally believe that it’s a case of chemo just being the asshole that it is. It’s ugly stuff and it does ugly things to the body.

So here we stand.

In the mean time, I am going to accept any medication and/or help that the medical proffesionals have to offer me until this gig is over.

I mean, what’s another 4 months?

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Farewell To Thee

October 10, 2008 at 5:17 pm (Treatment)
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Good Bye week 25. I wish that I could say that I would miss you; but I’d be lying.

Shot 26 was just administered, and I’m off for a warm bath and a bad book.

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Week #25: Ranting and Fussing the Whole Way

October 7, 2008 at 8:19 pm (Treatment)
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Ok,  here it goes. I just know this will make me feel better to get this off of my chest.

I don’t like my GI doctor. I’ve tried and tried to just go with the flow with this gentleman; but he has finally just right pissed me off. As a clinician, he is adequate. However, his bedside manner leaves much to be desired. I have found myself feeling more and more adrift as my treatment progresses. Which just stinks on so many levels.

Last week I was suffering from some pretty horrendous migraines and vertigo. Upon calling him to discuss what I feel are an increasing cluster of neuro symptoms, I found him to be extremely dismissive. His immediate responses were condescending, and I hung up the phone feeling frustrated and so invalidated. His statement of, “I’ve never had any of my other patients experience these symptoms during treatment”, makes me want to kick things. I am not a cookie cutter patient. I am an individual who is on some pretty damn serious drugs, and I need my doctor to hear me.

My husband pointed out that I started out our conversation by addressing him by Sir. This is how I was raised. I reflexively do it, and I don’t see myself changing it anytime soon. He is of a different culture, but I hate to even factor that into this. Personally, I think that he finds me to be a bit abrasive, and he keeps telling me not to read too much on the internet. GAH!!

Ultimately he told me to call my primary care doctor for a neuro consult if I felt that it was necessary. Um, hi. You are the doctor, and I am the non-medical school trained patient. I’m obviously calling you for your opinion, not some vague, ‘you do what you feel you need to do’ attitude. Meh.

I saw my primary care doctor today for the first time since starting treatment. I expressed my frustrations with my GI doc. I also expressed my fears about my treatment impacting other systems in my body. I don’t want some other underlying disease to sneak up on me while I’m treating my liver. I want my thyroid to be checked in depth, and I also want an in depth chem panel, not just the cbc I’ve been getting done every two weeks. So I had 4 vials of blood drawn today, and I shall have some results within a few days. I was also given a consult to a neuro, and I have an appointment on the 21st of this month. Ironically, I have my 6 month checkup with my GI doc that same day.

If I weren’t half way through treatment, I’d probably be looking for another GI doc. For now, I will just find a way around his bullheadedness. And I promise not to kick him in the shins either.

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Week #25

October 5, 2008 at 7:50 pm (Treatment)

Just a few words to describe this week’s shot; ow, ow, ow.

My, that Interferon, she is a harsh mistress some weeks. I have high hopes that my spine will have forgiven me by tomorrow.

This post brought to you by the letter ‘W’, for whine.

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