I have managed to stay 'healthy' and not get any flu or cold like symptoms since I was diagnosed back in December of 2008. I am extremely vigilant about who I surround myself with, and make sure that if I have been exposed I take enough antibiotics ahead of time that I have beaten it before it took hold. Well sadly, I think being in close proximity to Lauren for a week was more than my pills could fight off. For people who are not immunocompromised you can beat a cold in a few days - sadly, mine just finally got better within the past 2 - 3 days and it was just miserable. Drenching night sweats, fevers, chills, coughs, runny nose and sinus pressure non-stop. I kept taking my pills but when your immune system has been destroyed by the chemo, it takes a while.
Lucky for me persistence pays off and I was finally able to recover, though I definitely took down my mother, my father, my boyfriend and Megan with me... Misery needs company right?
In any event, on top of that my mother isn't doing so hot and its a lot for me to handle. The next part of this entry might be fragmented and seem just like random thoughts but I promise in the end - it will make sense.
My mom, for those of you who don't know, is essentially a Doctor, though the correct term is a Family Nurse Practitioner. She's completing her actual doctorate right now and will be done in May. My mother has 25 + years in healthcare and is one of the smartest people I know. With that being said, she blames herself for not catching my illness sooner and she, in my eyes, will never forgive herself though to me there is nothing to forgive. She has watched over me with a careful eye the past few years treating me at times, like a child, ensuring my health was of the most paramount importance to her. She is active in all my hospital stays, outpatient procedures and course of action. She is my durable power of attorney / health proxy, which basically means should I ever not be able to make a decision for myself I have entrusted her to make the decisions for me.
In June of 2010 my mother had her right knee replaced and though the surgery was a success, the person who exited the surgery was not the same woman who entered. At first we all chalked it up to excessive pain medication to alleviate the discomfort she was experiencing though as time progressed and her knee healed, her cognitive abilities did not.
Since the surgery she can remember neither the month nor the day nor the day of the week. She cannot remember conversations people have had with her post operatively. She makes claims of scheduling appointments and in reality does not. Her balance is virtually non-existant. She shuffles around with a confused look on her face. She spends most of her time in bed sleeping 14-16 hours a day, and when she is awake she sits in her chair in the living room and acts tired. Her speech is slurred at times and at other times her speech makes little sense.
It was funny at first because we thought it was a side effect from the pain medicine but after a brief period realized the severity of the situation.
First we thought she'd had a stroke, which was ruled out by MRI. Perhaps a TIA? Those are almost impossible to diagnose as they leave no evidence to be picked up on an imaging device and those symptoms resolve within hours.
She's been to neurologists who are taking their sweet time with her, treating this as though it is not a big deal when this is an emergency.
My mother is sharp as a tack when it comes to anything pre surgery. She can still have a medical conversation with you that would blow your panties off and more likely confuse you because you wouldn't think that information would be coming out of that confused looking face.
So far all we know is her vitamin levels are critically low which can play a part in fatigue, she is still undergoing testing to diagnose what exactly is wrong but we've done some research on our own.
There is something called "post operative cognitive disorder" which the symptoms for fit my mother to a T. She hasn't been diagnosed with this, but I would suspect it's on the horizon. The scary part about PoCD is that not time frame is given for remediation and no medication can be given to remedy its symptoms.
I mention all this because it is really taking a toll on me.
I have become her babysitter, the keeper of what little schedule she has left. I feel obligated to stay with her because Im afraid she will hurt herself if she is home alone. We have the same conversations multiple times and I am asked the same questions repeatedly. I worry about her and I worry about me, should something happen to me and decisions need made - at this point she would have to be left out of the equation. As I know she can process the information, she just isn't able to articulate what she wants to say.
I feel like the mother who has watched over me the past few years... I take that back... I feel like my mom, the one who Im so close to, the one who I attribute with saving my life, is trapped inside her body and can't communicate.
It's breaking my heart inside to see her get frustrated day after day, and fall time after time because the real Cheryl deep down knows something is wrong and it is bothering her. I know I have no right to get angry or even short with her when she can't remember things but it is so hard because I often times forget that she can't help it and its not her fault so to her in addition to not being able to remember, which I know upsets her, she has me being mean to her for essentially doing something beyond her control.
There are more details to the story, but thats primarily it. I hope that soon she will have a diagnosis and a course of action to help guide her and our family on the path to recovery. By family of course I don't know if I include my sister, she just ignores the problem and is only home for a few hours a week anyway, so she is not really a participant in the problem.
So now that I'm back here in reality, here's hoping for a little more patience and understanding on my end.
