(written November 9, 2010)
Yesterday I had my three year post cancer exam. My CA 125 blood work was only 10.5, which is great. My pelvic went well. If I don’t hear anything about my pap in a week or two, it was normal. Yipeeeeeee!
I have to admit that I feel a great sense of relief. In three years, this is really the first time that I have had a niggling doubt that something might be wrong. It is difficult to stay positive when I have been so tired lately. I have been about as tired as I was when I was diagnosed with cancer. (I vacuumed the house yesterday, and tried to get the mopping done, and I had to stop twice to take breaks. A few days ago, in Costco, I leaned up against a stack of boxes and almost fell asleep standing up. I haven’t done that since I was going through chemo and radiation.) Although energy wise, I am getting a little better than I was a month ago. Once I’ve been awake about three and a half hours, no matter how awake and energetic I was upon waking, my eyelids start to lower, my eyes start to blur and I have to fight to stay awake. Each morning, I think, wow, I feel so much better today, maybe I’m normal again! Then, a few hours later, I start pooping out.
The tiredness isn’t even what is scaring me the most. I am forgetting things. Some days I’m mostly fine and only forget a word once or twice and I can come up with an alternative word within about 5-20 seconds. But, there have been a couple of times when I’ve been in the middle of saying something and it is as if there is a bubble of silence in my brain. It feels as if I have no ability to access language of any sort at those times. I picture myself as a cartoon character chattering away, with a string of words coming out of my mouth when a big, impermeable air bubble blocks out all access to any more words. A moment of panic sets in, my mouth stops running because it has no way of knowing what sounds to make. My brain wouldn’t understand how to interpret those sounds at that moment anyway. In my panic, I can feel myself close my eyes and take a deep breath, as if I am trying to breath the words back into my brain from the ether around me. I feel like I am suffocating in a way. Not suffocating for air, but for language, for ideas. I can’t even form a coherent thought during those times. All I can do is gasp and grasp for something that I had a moment ago but is gone. I am totally aware at the time of what is happening, and that terrifies me. I feel like I go somewhere else for a moment. I don’t think that eternity of languageless panic lasts more than a few seconds at a time, but it’s hard to tell. It’s almost as if time is suspended, set aside in that same place where my language has gone. I guess I need to remember to ask whoever I’m talking to how long I go without talking. It usually happens in the middle of a sentence, so it’s probably pretty noticeable. It is definitely noticeable to me.
Friday evening, I found out that my disability insurance only approved a week and a half of payments. I had no idea. I called them to tell them that the nurse practitioner wants to extend my leave, and oh, by the way, I’ve got a gap in the checks coming in, do you know when the next one is due? They said that chronic fatigue is too vague of a diagnosis and that they had sent me a letter requesting all doctor’s notes, test results, etc. I never received the letter. They said that they also called me, but I had privacy manager so they couldn’t get through. I explained that all you have to do is say who is calling and the call will go through. I told them that I am having trouble staying awake for more than about 4 hours at a time, and that is why they are keeping me off work. She said that they need scientific verifiable proof. Of course, now I’m freaking out because I don’t know how they determine what numbers of this or that verify that I am losing my mind and my energy. What if the numbers aren’t bad enough? Do I go back to work, knowing that I am impaired, since, after all, I’m not communicable or dying, I’m not unable to walk and talk and drive, I can see (even though stuff is blurry much of the time due to the exhaustion, and it makes it hard to read some times), I can hear, I am coherent most of the time. My Epstein-Barr Virus numbers have slightly improved, I’m not anemic, I don’t have Celiac’s disease, my diabetes is not out of control (A1C is 6.2), and my basic blood work is within normal range. But for some reason, my B vitamins have dropped even further even though I have been taking the supplements and getting jabbed with a needle to get vitamin infusions (my last scheduled one was today, as I began writing this). I want to know why my vitamin B levels are dropping when they are mainlining the stuff into my veins. I start B12 injections this week at home.
(the rest of this was written November 11, 2010)
Tomorrow I go for memory testing. I am hoping that they will be able to figure out what’s going on. It does seem worse when I’m stressed (like finding out I don’t have any more money coming in for a while) or when I’m tired (been awake more than 4 hours). I have a real fear of this because my grandma and two aunts died of Altzheimer’s. My Aunt Ronnie and my Grandma forgot how to do everything, including eat and eventually swallow. My Aunt Annie forgot that she was allergic to bees. Also, my mom had a couple of strokes in her lifetime, with the big one messing with her language center, confusing her thoughts and blocking certain words from her mind for months. So, with language being such an important part of my identity, I am really scared that this stuff may be permanent. Hopefully, it’s just related to the vitamin deficiency. My fear is probably totally unwarranted. Hopefully I will find out more tomorrow.