Can you believe it has been two weeks since I had my procedure? Yup me neither. But here I am two weeks out. Instead of panicking about going in for brain surgery I am panicking about having stitches taken out. Not going to lie I am more than ready to have them taken out. My head is itchy, I have been washing my hair with baby shampoo and avoiding the area like crazy. Tomorrow at 3:00 or 3:30 I am getting them out. Im hopeful my sister will give me a good hair washing tomorrow night or this weekend. The thought of the scar kind of freaks me out and I don't want to feel it.
Its been a busy two weeks. I had my pet scan which came back stable. I am still struggling that I am being treated for progression but my scans are stable. It doesn't make sense to me but my symptoms are all pointing towards progression.
For those of you that don't know because I don't remember if I wrote it about it talked about it or what. But here is where we stand. Several weeks ago I noticed my feet were always cold. I couldn't get them warm. Then I noticed a decrease in sensation in my legs. Not all the time I noticed it more when I was shaving. I mentioned it to Dr. Piper that it felt different but didn't think much of it. I have feeling in my legs but it def isn't what I used to have. As time as has gone on things have gotten worse. The decreased sensation has continued up my legs, the coldness in my feet hasn't gotten worse. Today I noticed that I couldn't get my hands warm. Which makes me worry is it spreading.
Dr. Piper ordered another lumbar MRI scan. It was supposed to be today but because of my shunt I have to see the neurosurgeon before and after any trips into the mri machine. So it was changed until the 8th.
Last time I met with Dr. Piper we went over what progression treatment would look like. This was after my spinal tap before I had the shunt placed. We were hoping that the shunt would take care of my legs. When I talked to Dr Piper after my shunt and my legs aren't getting better we talked some more about what progression treatment would look like. So here I am trying not to panic that I am moving onto my second line of treatment. Panicking that this isn't what I expected. Panicking because I am not done fighting, but scared about what the treatment will look like. Panicking because I am not ready to talk to the boys about progression. Panicking because I don't know what the future holds. Honestly, it feels like I have been sucker punched and being diagnosed all over again.
On a positive note. The shunt is doing its job (as far as I can tell). The swooshing in my head is gone. I haven't had a headache that didn't go away without tylenol since I went in. The whole thing still freaks me out and if you had asked me a week ago if I made the right decision I would have told you I don't know. Today I can confidently say that yes I did make the right decision to have it put in. The recovery was horrible, but I made it to the other side and here I am!
I can not thank all my friends for the support they have given me. My friend Jordan made a mealtrain and we were so lucky that I didn't need to think about meals for several weeks. Thank you to everyone that dropped off meals for our family! Thank you for the cards and gift cards for dinner! The kind words, facebook messages, text messages, prayers and good thoughts. The friends that took my family under your wings, offered to take the boys and entertain them, bring them to activities. None of it went unnoticed!!! I am horrible about "finding time" to write thank yous. And I promise that I am going to get better (in fact I pulled out the cards to get ready to write them all!). But it seems so small for all that everyone has done for us. Thank you!!!
Picture is tulips because who doesn't love tulips? I am excited for Spring and Tulips!!!!
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