Jan 9th Dr. Appointment update

Hello!! Thank you to everyone who has called or text today. I'm so sorry that I was not able to explain everything to text for everyone but it is just really too much information to text and for my mental health, it really is best for me to just say it once. That's why I love this blog!

The staples are out. It was easy, painless and I feel so much better, The scar is so nice and thin, it's not going to be noticeable once my hair comes back, which it has already started to grow in. I knew I could wash my hair tomorrow, but was very disappointed to learn that I can only use baby shampoo for two weeks. This will be interesting, but at least my hair will be clean. I seriously feel like Willow Smith with my asymmetric haircut. I'm so happy it's not as bad as I thought it would be! I have most of my hair.

The pathology report shows that it was rhabdomyosarcoma, meaning same thing I had before. So I guess good news.... it's not a weird new cancer!

Treatment options: Since rhabdo normally doesnt go to the brain, there is not a clear cut treatment protocol. Whole brain radiation is an option. The thinking behind that is if there is one tumor there may be other cancer cells in the brain lurking, nuke them all. But with that you are also risking life long cognitive issues. For now this is not an option. Especially at MD Anderson. Outside of MDA it's standard, but the highly skilled surgeons at MDA have better succcess rates than outside so luckily for me this option has been taken off the table.

The other options are watch/wait or gamma knife radiation to empty cavity. Because the tumor was in the brain, there is no way to get really nice big clean margins because then you are taking brain tissue. So there is always a risk of there being a few cells left behind. Do you wait and see if another tumor starts to grow, or radiate the tiny area, possibly causing problems when not needed. There is no clear answer. But fortunately MDA has a clinical trial focusing on that right now that I am almost accepted into pending one or two more things. I met the team today and I love them! I have always heard such great things about clinical trials from other patients. You are followed so closely. Best part about it for me is I don't have to make the decision. A computer will decide if I get radiation or watch and wait. Either way I will be very closely monitored. If I do radiation, it will be next week, one day treatment. If I do watch and wait I will have MRI in one month. And if I am on the watch and wait, this does not remove me from treatment. If ever they suspect something may be growing, I get the gamma radiation. I'm sure that would drive some people crazy not getting to choose, but it's good for me.

I did not get to see my medical oncologist today. I have a PET ct next Friday, just to be sure nothing else is going on. I will then meet with him the next week to see what he thinks about chemo. We have been basically told that chemo is really not best for this because many don't cross the blood brain barrier. But he did have some ideas last time, so I'm very interested to see what he has to say.

As soon as my neuro surgeon saw me he said something about my "chipmunk cheeks" and then said I could speed up the taper on my steroids. So I will be off 3 days earlier and he said all this puffiness should go away with in a week or two after stopping. I still have to take seizure meds for 3 more months. I have been cleared for most activity, but still need to remember I just had surgery 2 weeks ago. And I have been cleared for yoga!!! Of course I got the listen to my body talk and I will. If all I can do is a few postures and then lay in the hot room for 60 minutes on my towel, then that's all I will do, happily and without shame! I'm just happy I'm cleared to go.

Because January is filled with so many what ifs and scans I will not be attempting to come back to work this month. I need to get all of this cleared up first.

I have been cleared to fly and will be coming home tomorrow. It may only be for a few days but I'm so happy! I really need a few days to just act like this isn't happening, clean my house (yes, yes, light cleaning, i know), watch all my dvr shows (Dexter and Homeland finales!!!!))))  and spend time with my best friend, I've really missed him.

Apologies now if I'm not my usual social self when I'm at home. I am so embarrassed by how I look. Seriously, I look like I have Cushings!!! And I need to rest. Also, steroids greatly depress your immunity so if you want to see me and I quiz you, which i will, about your health history over the last 2 weeks don't be offended. The last thing I need is a cold right now.

I really hope I can stay at least through Tuesday. I have been trying to see a new gyn and I have had an appointment waiting for almost 3 months!! 3 months!!! I would hate to have to re schedule, but if I'm picked for radiation it may have to be that day.

Again, thank you to everyone who checked on me today. I am feeling a little overwhelmed from today but I think a visit home will be just what I need to feel better.