It’s weird to not have had any CS days…

But then I can’t help but wonder if this shingles or now this awful flu/cold I have isn’t being exacerbated by Cowden’s.

The wonderful news (YAY!) is that the shingles is MUCH MUCH better…but I would have thought the acyclovir would have kicked out this other junk I’m battling. All I have done all weekend is sleeping and drinking my concoction of hot water, lemon juice, honey, and cayenne pepper. But I am out of lemon juice. Go figure. I get that things need to run their course sometimes. Rest. Water. Rest. And more water. Plus orange juice and sleep. All that stuff I am doing, plus some. I just wish this cold/flu would hurry up and leave. Because I have a job interview in a few days. Now, the old me would stress myself out to NO END about it. Worry that I’d make a bad impression and all that other stuff. But now? You don’t sweat the small stuff. (Granted, a job is NOT small stuff, of course. But making myself sickER over stress and stuff isn’t healthy. I KNOW THAT NOW.)

I’m frustrated still to have not heard back from Dr. GI’s office (I don’t know his name) about the NEXT appointment I must make before my colonoscopy. And we still don’t have our computers back. And the only Cowden’s related thing I have next on the agenda is “said” colonoscopy and an endoscopy, I think. (I’m NOT looking forward to that. But we have to check everywhere as much as possible to see if I have hamartomas in places they SHOULD NOT BE.)

Gosh, it’s so weird to read “morbidity” in reading about Cowden’s Syndrome. And yet here I am gaining weight and freaking out because I have been so sick and haven’t worked out in days. Granted, I wasn’t being mindful a few weeks/months ago about my food (yet I was working out very well and very hard) yet I ate GARBAGE. Now, my food is better and more under control and I’m not exercising (because I have this plague). Why can’t I get it that I MUST do both at the same time?

On a different note, I’m still pondering about the PBM and when I am going to do that. A few people have said, “Why would you do that when you have healthy breasts?” – but it’s MORE than that. It’s saving myself 40+ years of breast MRI’s. Those things are TOUGH. AND ROUGH. If you’ve ever had one, you know what I mean. If you haven’t, read up on it here. This is a pretty 1st grade definition of what happens. But having your dairy queens hang down an opening for 45-60 minutes while you are feet first into an opening is quite traumatic. Just believe me, it is. So, it’s something I need to do for my peace of mind. Really. But I don’t know when. I keep hearing in my mind a number, and I’m assuming it’s the time when I can go ahead (if I am in fact ready). But who knows where my life will be at that time. Or what I will be dealing with my head. I can only handle one MAJOR thing in my life. And my head takes precedence.

On a different, different note. I have made contact with a person whose mother is battling brain cancer. Will you please go to her blog and send her some love? Comment, say a prayer for her, her mother, and family, or anything that you are comfortable doing. I know it will mean so much. It’s odd when I tell people about my brain tumor. And they tell me, “At least yours is benign.” – and I struggle with that sometimes. Because mine isn’t eligible for radiation or chemo, and I think sometimes, “How would it be if it were? How would I be if it were? Would I be different? Would I feel different? Is Lhermitte-duclos disease (this gangliocytoma) an absolute death sentence like brain cancer?” – because if I could have chemo what if that could get rid of it? Things like that run in my mind all the time. I know those thoughts aren’t good or productive, but I have them. And that’s why I have this blog. To write about them and to get them out of my head lest I go a little batty from them. It is what it is. This is where I am. Chemo and radiation isn’t an option for me. And, yes I am very lucky it is a benign tumor.

So today and yesterday and this past weekend have included lots of sleeping and resting. Not big Cowden’s or LDD days, and I’m quite thankful for that.


5 thoughts on “It’s weird to not have had any CS days…

  1. My breast MRI was face down and head first into the machine. ANd yes of course “the girls” were placed ever so gently into hard plastic boxes. My chest hurt for days after. Then to add insult to injury, my arm reacted to the the contrast while driving home. By the time I got there my arm looked like something out of a Popeye cartoon. Took a few days for the swelling to go down. It also hurt. The appointment before mine also ran long so I sat in the office for over 2 hours. I could not even imagine doing that every 6 months.

    • I know. I KNOW. I’m already flipping out for the next one and it’s not til December. Mine are to be every year with the mammos alternating. But with my cruddy/weird mammo last month with dilated ducts (which everyone tells me is normal but it’s never sat right with me)….I just have to hold on a bit longer.

      • You are right..mine would have been 1 per year with mammo rotating 1 per year so something every six months. I just remember my MRI being awful. I also forgot to take some kind of music so I had to listen to the machine for 45 minutes. Almost drove me crazy. Music would have helped!

  2. I hate it when people say…”…at least…” when referring to anything about my condition that they can’t even begin to relate to. My cancer may be stage 1 (that’s what I’m hoping anyways)…but I still have CANCER!!!

    I think people fail to think things through. They can’t possibly understand all the thoughts that run through our heads because they have never had to worry about it. I can imagine what the radiation and chemo thoughts must be like when it comes to your brain tumor. The “what if’s” are never ending.

    Hang in there…sending you soothing, calming energy…and I hope kick the bug you are fighting soon.

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