Posted: January 25, 2012 in God Moments, Health

I hate patience…especially if it is waiting on something I think I deserve. But, I guess God has a way of teaching us things when we need it most.

These last few days have been a whirlwind…some days feeling good (like today) and then feeling completely overwhelmed and just ready to move to Hawaii (yesterday). There is just so much going on in my life right now, I feel like I’m spinning so many plates and just exhausted trying to keep everything going as it should…you know, the way I think life should go. Trying to spend time with my kids, trying to connect with Steve, trying to understand these strange things growing i my head, understanding CIDP and my limitations, recruiting more volunteers for our children’s ministry, preparing for a new Wednesday night program, trying to get the church website going again…doctors appointments, get-togethers, calls…cleaning the house (ummm…yea…)…you get the point.

I caught myself literally saying, “I can’t do it all.” At that moment, looking at my cluttered desk I saw a button that I received a year ago from a Children’s Pastors Conference…it read, “SDWSC” which means She Did What She Could. In other words, I AM not, but I know “I AM.” I am not God, but I know God…I can’t do everything, be everything, provide everything but I can do something for the Creator and Author of Everything. God didn’t create me to do everything…whew…that’s a relief!

My priorities are God, family, ministry….I get these reversed a lot. Its hard…its always been a struggle. But I’m working on it…

Today, my patience was restored. My meeting with my doctors got moved up to today. It was absolutely amazing. The peace and comfort I felt there today was just surreal…its like God was saying, “Its going to be okay.” Long story short, on February 6th I will have my first radiosurgical procedure to…are you ready for this…DESTROY both tumors! Not shrink…buddy, they are out to fry them suckers! The thing that blows my mind about this is that the center is the only one in Florida that has a specialist that has experience not only with meningioma, but with this procedure…and has 2 successful cases! This procedure lasts about 1 hour and involves the MRI-like machine where the doctors literally guide the radiation beams (gamma knife) in an through the tumor itself. I get to be fitted for a neat little head piece and I will be given IV (relaxing meds and dye). It will be disappointing that I can’t wear my hearing-aid…but they are working on a communication method. I am pretty good with reading lips, but this won’t help in this case. After each treatment, I will have IVIG and chemo the rest of the week. They were toying with the idea of offering it immediately after the procedure, but thought that would be a bit much for one day…I agree.

I will have the procedure itself done twice, followed by a round of chemo (equaling 2 weeks). Monday Feb. 20th will be an “off” day…but pending on how everything is goig, they might consider an alternative radiation method. The goal is to re-evaluate and re-group by Monday, Feb. 27th.

I’m told all of the side effects…tired, lack of eating, hair-loss…all of which I’ve already had. BUT to say that I’m thrilled wit going down this road again is…well…not true. In fact, the doctors warned me this time it will be worse being that I will have the full dose of chemo and ivig…both make me sick, and tired…and still bald (at this point I don’t mind being bald…I like my hats!). Its SO hard hearing Josh pray at night for “mommy to get better.” I guess that why I’ve been trying to do everything lately…I feel better…I just want Josh to know I’m trying.

So…I have the rest of this week and next week off of treatment (pre-meds, but no treatment). I’m so happy for these breaks in the storm. I have made so many calls lately…oh man, I love having the energy to reconnect again! I love feeling good…why can’t I just be healthy? Maybe its Gods way of rewarding my patience…knowing it will be tested again soon.

I’m getting off…too much I want to do and its so hard making myself update when I have energy…what can I get into…hmmm….UK WILDCAT BASKETBALL!!!! Go Cats!!!!!

  1. debra says:

    hello. i read your blog but am not a member of pbcc, but i have the same illness. i know this is likely a dumb question but you wrote about the gamma knife and that you will be the third patient. that frightens me. shands and miami have been using the gamma knife for many years. have you considered being seen at shands? the gamma knife is serious, but a good thing, but i would not want to be the third patient. please consider calling shands to be seen there?

  2. Debra – I guess I should have been more specific here. I wrote this when I was tired and sometimes not all the info gets across correctly. The neurosurgeon that I am seeing has used this procedure in many cases to simply “shrink” a tumor…either AFTER a surgery or after every treatment method has been exhausted. Rarely is this form used as first-line attack to demolish a tumor (patients usually have a safer bet going through surgery or another form of radiation prior to this…at least injecting radiation into the tumor itself before this procedure). In my case, due to my CIDP they have eccommended this treatment first (safer) and they have started using this method as first-line attack for older patients that may not do well in surgery or patients (like me) who are at the right tumor size and location with other outstanding health risks. Long story short…yes, they have done this procedure many times and I'm very comfortable with the way this is going! I'm excited that the advancement of technology has allowed this type of radiation in cases like mine where surgery is not a safe option. Maybe one day, surgery will not even be neccessary. Also…the main onocologist on the team I'm with previously came from Shands…they do a lot of the same level of treatment here too….glad because its closer to home! Sorry for the confusion…I just deidn't want you to be alarmed or concerned!

  3. I guess I should also add…they have (over the past 2 years) started using this form of radiation surgery for these special cases and have had high success rates. I guess I'm still floored that they even suggest that the tumors can ge gone…I feel like its modern day “Star Wars” going on in my brain! Insane! I'd love to connect with you more and get your story…please email me or friend me on Facebook!

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