Tomorrow I have my 1st kidney screening and I’m scared. And you know? I’m a big liar because there will be no positive post after this. It’s late and I’m tired and I need to get this out of my head and get to bed. I tried. I tried to put on a happy face today. I got up and I got dressed and I walked for 40 minutes and I went to Family Home Evening. But my heart isn’t in it. Because I’m so scared. I want to be a survivor. I can’t change anything about what’s going on. I KNOW THIS. I can only change my reaction to things yet THAT IS WHAT I AM HAVING SO MUCH TROUBLE WITH.
I have to go through this alone, the doctor appointments. I can’t have anyone hold my hand. I had those warts burned off my hand today that were just out of control. I probably should have taken a picture they were so hard and disgusting. Total over growths of tissue. HELLO COWDEN’S SYNDROME.
I talked to Dr. L about a chemo drug (B something) but my lack of insurance won’t cover it so he wants to try some other stuff first. But I CANNOT live the rest of my life having these 3 warts on my hand frozen off every 2 weeks, can I? What is the option? Huge MONSTER growths on my hand? Then I really will feel sick. I try to think positive because when I hear “rare disease” I associate “sickness”…but then I think, “Well, I don’t really FEEL sick!?” – but then I look at my hand, or think about my head and what’s in my cerebellum, or the healing of where I had the mole removed, and think….“Well, Heather. You kind of are sick.” REALITY CHECK. That sucks.
And then here’s another slap in the reality check department. The ENT I saw a while back for this thing in my mouth told me if there was something white or black in my mouth to let her know right away…because that’s a sign of oral cancer. AND…on my tongue I have these bumps (papillary or papilulues or something) and they have just been chillin. They seemed to ALL COME after my neurosurgery last July. Well just today I noticed one (a new one) on the end of my tongue and it HURTS. Bad. I thought I just had eaten too much salt or something yesterday. Then this afternoon I look at it and it’s white…not colored like the rest of the ones in my mouth. And then tonight…it’s black/grey. DEFINITELY not like the other ones in my mouth.
I see the ENT on Friday. I was supposed to work on Friday. Did I mention that I also have no job and no money? I have anxiety and don’t have any IDEA how I am supposed to work and manage all this and my bills? And life my freaking life? I want just a WEEK with no doctor appointments? Is that too much to ask? WHAT IS WRONG WITH MY TONGUE?????????????????????????????????????????