Thursday, February 25, 2010

Read Death....Really????


Sitting in these outpatient infusion rooms getting pumped full of toxins isn't how I like to spend my days but as I look around at the people, with their head scarves and eyebrow-less faces, that file in and out throughout the day I feel lucky.

I used to think that chemotherapy was chemotherapy. That there were different drugs for different diseases but that they all made your stomach lurch and hair fall out. Imagine my surprise to find out all of the subtle intricacies of how chemo works and why some side effects aren't as universal as I once thought.

It should be noted that I am in no way a chemo expert but I try to pay attention to the patients around me with their IV bags of "life saving" medicine. It strikes me as supremely odd that medications that are supposed to make a positive impact on your health seem to have the worst nicknames...Red Death?? Really?

When I come in for my infusions I sometimes have to wait hours while my chemotherapy drug is being "mixed". At first this didn't make sense to me. I come from a non-chemo world where IV drugs are mixed up, put into IV bags, shipped, and stored. Apparently this is not the case in chemo world.

There was one day when I was waiting for what seemed like hours upon hours for the pharmacy to mix my chemo so I finally asked my nurse why it was taking so long. I had heard from a friend, a nursing student, that during one of her classes she had seen the gloves that the pharmacist had to use when dealing with chemotherapy drugs and that they were no joke but nothing prepared me for what my nurse told me. This treatment that I'm getting...that all of us in this infusion center are getting...is so potent that when it's being mixed the pharmacist is wearing what can most accurately be described as a HazMat suit.

Why the precautions, you might ask?? Chemical burns. The stuff can't even be inhaled without leaving a wake of destruction. The more potent drugs can eat through the plastic IV bags (hence the maid-to-order chemo).

So that's what's making its way into me as I type this but I feel lucky. I tell Robbie all the time that my MS/chemo isn't going to kill me...life will simply be more challenging.

I feel lucky because I have something that so many of the other patients here don't....a future.

Tuesday, February 23, 2010

My Truth

I often feel like a bad mother.

Now I know that these days it's not so uncommon for a woman to admit to those feelings but knowing that it's not such a taboo subject as it once was doesn't make me any less guilty over feeling that way.

I don't feel I'm a bad mother because I don't make enough time for my son, or because I don't feel I love him enough. I've never experienced a moment, however fleeting, of confusion about his role in my life or why I was put here.

I was meant to mother THIS child. I am more sure of that than I have ever been about anything in my life. But as sure as I am that Robbie was meant to be mine...I'm equally convinced that this kid is getting a raw deal.

Is it wrong to wish that he be spared the realities of a mother who's ill?

Legal Disclaimer.....just kidding!


So...it occurred to me as I was showering today (a feat that can drain me so thoroughly that it should qualify as an Olympic event) that if you haven't lived with someone with MS you might not understand why the simplest of things prove themselves to be exhausting, or how someone might say that their limbs are simultaneously numb and in pain, or why the phrase "You don't look sick..." might incite a riot.

I'm going to trust that when I talk about some of my experiences you'll understand that I'm not complaining about my lot in life, adopting a negative outlook, or doing anything other than sharing and venting.

Why attach that disclaimer?? Simply put....because it seems that any time someone who doesn't know me well hears me speak of these things...hears me rant about the frustration I feel when I can't see out of one eye for no doggone reason other than because that happened to be the way the chips fell on that particular day...reads something I've written in which I've grumbled even mildly...it gets turned into my being pessimistic about my illnesses and thereby making them worse.

Can I trust that with the aforementioned caveat in place I can type freely?? I certainly hope so otherwise this little blogging experiment is quite thoroughly useless...

Let the wild rumpus begin!!!

Tuesday, February 9, 2010

Moments

(When you have MS you never know what will expire next.)

As I come up on the anniversary of that life changing day when my body stopped being my own I've found myself replaying key moments in the last 3 years.

There was the day I woke up with a headache and blurred vision and decided to take it seriously and the day my neuro-opthamologist called to tell me he thought I had a brain tumor. There was the soul crushing moment when a man I barely knew told me I had Multiple Sclerosis. There have been times when control over my body has completely eluded me and times when things are a little less dire.

More often than not these events have been punctuated by intense emotion...grief, sorrow, frustration, fear, and more recently resolve.


I have resolved to not give in to the sometimes overwhelming desperation that has haunted me since my diagnosis. The grief I've felt over the last 3 years has ebbed and flowed and ebbed again. The frustration and fear that have become my constant companions on this journey to wellness are now serving as a catalyst and motivation to reach out to others in similar situations.

This stranger in my body will not steal any more moments from me...