WHAT IN THE WORLD IS WRONG WITH PEOPLE THESE LAST FEW DAYS?
I mean really!
3 different instances I’ve had people jump down my throat without any warning or explanation.
You know…just an FYI. I’m a human being with feelings too! SHEESH.
I am SO. OVER. DRAMA.
I saw this quote on F.acebook just now: “Feathers appear when angels are near.” I saw a feather a few days ago in the front yard. 
That’s nice.
I have so many good things I wanted to write about. A good therapy session. A great oncology appointment yesterday. More on the appointment with the plastic surgeon and some thoughts I have been mulling around in my head. I have these incredible thoughts during the day and I think, “Wow, I should write that in my blog sometime.” Then, by the time I get home and have eaten dinner and worked out, or done laundry, or fed the cats, or watered the plants out in the backyard for Grandma, or done any of the other things I need to do…
I’m exhausssssssssssssssssssssted.
And I can’t remember any. THING. But I’m not complaining. This is a good thing. GREAT thing actually.
But it is almost 9 am.
HAH.
I have GREAT news: My kidneys are CLEAR! No hamartomas or abnormalities!
I was getting to worried about what the scan said before my oncology appointment yesterday afternoon that my blood pressure spiked to 140/80 something. Now, part of that bewilders me because at the plastic surgeon JUST the say before my b.p. was 124/78 something. No joke.
Hum. Good thing I just drank my protein shake and already walked 30 minutes this morning!
No caption necessary
(Courtesy of @Disneymagicland on I.nstagram)
Spinach crab salad, blue cheese crumbles, walnuts, yellow peppers, dill pickles, tangerine balsamic vinegar, and now I’m gonna eat it!
I told Mom that someone from one of the online support groups I am in is from the Netherlands. She replied, “Well, anyone can have it.”
I KNOOOOOOOOOOOOOOW that. It’s just weird to me is all.
Of course, it’s no different if I had brain cancer or thyroid cancer (which I did have). ANYONE ANYWHERE can have that. But…I guess because I’m wearing this hat so PERSONALLY now…and it’s a “rare disease” of 1 in a QUARTER MILLION PEOPLE…
It’s just weird…
I don’t know.
I mean…it’s the NETHERLANDS!
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?????????????????????????????????????????
…I will add a positive one. That sounds like a good plan. To end my posts on a good note. Mom and I went to the park to watch the kids race their pinewood derby race cars. It was super fun. They kids had so much fun and both of them were in the Finals!
Blessings. I have blessings all around me. I have struggles everywhere I turn, but then I need to counter them with blessings or the reminders of them. I guess that’s why my room is filled with pictures, too.
Here’s why I get frustrated. There are so many things I feel I “should” be doing…but sometimes it’s all I can do to get up out of bed. BUT I DO GET UP OUT OF BED. That’s huge!
I should be looking for a job for summer. But it’s all I can do to manage all my doctor appointments. Plus I am having the kidney ultrasound/screening on Tuesday and I know one of my virtual friends from the online support group has/had kidney cancer and has only one kidney. That concerns me, greatly.
I’m tired of headaches. Just plain effing tired of them. But Mom brought up a good point because we were just outside in the sun and she had one too. I feel more sensitive to them now and I need to find a hat that will fit my big head. I never really felt that I had a big head but I guess with Cowden’s you have a big head. I vaguely remember growing up sort of having issues with hats fitting in softball but nothing out of the ordinary. I mean I had my hat in games and for pictures it was no big deal. As an adult it seemed a bit more prevalent but I never gave it much thought. And then I found out from the geneticist that having a big head is one of the symptoms of CS. Big freaking whoop.
I was supposed to go to Disneyland today and that fell through. I got a weird/new/bad/scary headache last night that came with a nice plate of nausea. And with the heat, upon waking I just felt I needed to stay close to home today. So, I passed on it. I’m so sad because I haven’t been since February and that’s just way too long.
