LONG POST y'all... stick with me!

I had my one year MRI and provided an update on how all of the one year journey stuff was coming along on my site.

The good news is, my one year MRI is STABLE.  We know that since my removal, the remaining tumor has not grown any bigger.  It's still that cute little butterfly shape in the PMC of my brain.  Most days, I'm good with it being it there.  But, there are some days where I'm really discouraged it's there.  Tumors in this area are incredibly difficult to remove because it almost always results in a total loss function in the opposite side of the body and it's usually irreversible.  

Awake craniotomies can be done (and they aren't as scary as they sound but yes, you're awake for a portion of the surgery, but not aware).  However, finding a doctor to do these is a very difficult process - and so far, my experience has been that these doctors are not at UTSW, which means, if that does require surgery later,  it means travel.

But, let's look at the 90% of what's been removed and celebrate that.  90% was removed in my somatosensory cortex and has not regrown.  That area has healed so nicely and God has done amazing things to heal this portion of my brain.  I have re-learned how to tie my shoes, braid my daughters hair, drive a car with my left hand, type, use my fingers to access my phone, cook, use knives successfully, and much more.   

A year later, I am over the debilitating fatigue.  I am finally starting to figure that part out and where my norms are at.  Some things are new to me now and have been adjustments.  Things like consistency with my vitamins was a struggle for a while - not because I didn't want to take them but because I honestly can't afford them. There has to be a better way...seriously.  I don't know how people can pay for a thousand dollars worth of supplements a month.  

Food is another area of consistency and it's honestly just a battle I feel like I can't win.  I can't afford the insane dollars on pre-packaged food, but I need a pre-packaged solution to avoid eating crap.  Prep is hard.  Worse than the difficultly is the consumption of time it takes on time I simply don't have.  

In other news, I had my functional medicine appointment this week, which was the final delay in this post.  Over the last year, I've been working on two simple (but incredibly difficult things):  my health and my bloodwork.  The last time I followed up with my functional doctor, my vitamins were basically going in and doing nothing.  I was paying a lot of money for vitamins to not be absorbed.  We started working on absorption this time and now, we have additional updates about my bloodwork: 

My absorption of some key vitamins (like B) is working.  My D has gone WAY down from last time (even with an increased dosage).  They assume it's the timing of when I'm taking it (in the morning with water based drinks), so we're moving that to a meal with fat since D is a fat soluble vitamin.  

I'm still out of whack with my thyroid, so she's adding in Tyrosint (I can't take Synthroid or Levothyroxine) to see if that helps, but the good news is, my T4 now looks good from the Cytomel.  My testosterone levels look worse (even worse than last time).  She thinks that's absorption too, so we're changing the timing of that as well.  

She's having me stop some of my supplements and I'm stopping the IMD Intestinal Cleanse (heavy metal detox) until I get that heavy metal panel back to confirm the path I need to be on.  But, I have to be on a higher mineral supplement for 2 weeks before taking that since my minerals are off, too. Phew.  So much.  

The good news is, we've removed some of the pills.  The bad news is, we've added in two more (more glutathione and a mineral support).  We'll go back and check in 2 more months.   

I did ask about IV therapy.  I take a LOT of pills and honestly, I'm wondering if the pills just aren't working.  Maybe it's time for IV's.  But, here's the weird thing about that - WHO do you trust?  There are SO MANY pop-up IV places now that you can't tell who's selling real stuff and who ACTUALLY knows what they are doing.  So much of it is doc-in-a-box and hype and I'm nervous just trusting my veins to anyone.  Same thing for Ozone Therapy.  Would love to do it - but again, who do you trust?  And I'm nervous that SHE doesn't know either.  Maybe time to find a new functional doctor?  What are your thoughts?

We also got news that my co-pay program for my medication has ended so we are back to the full price until I meet my deductible for this year.  My insurance covers what they can, but I pay $250 now instead of $25.  Praying God opens a door on that co-pray program again soon!  My doctor also wants to put me on the new medication that has been approved for my cancer specifically.  That will wait until our next visit though, in 4 months.  You'll remember from previous posts that this was the medication we were praying for!  God works in mysterious ways!  His timing, ALWAYS!

In other news, my stress level is rising.  My son has been accepted to go to Hungary with our church this summer and we are SO excited, but I am NERVOUS!  We have started a fundraising site for the last small items we need and I am praying over the time they are there not only for my own health while they are gone and no issues, but for them to be fully BLESSED and WELL during this time.  I would welcome your prayers for them, too.  More info about their journey here.

Thank you always for praying for me and for my family.  We so greatly appreciate your prayers and I know God has done amazing things over the year!  To be at this point and hear STABLE is a wonderful thing. It's not gone, but y'all, it's NOT growing - and God is doing that!  I can't wait to see where we are in another year.  

Praises:

• STABILITY in my tumor regrowth that remains
• NO regrowth in existing cavity of brain
• Silas and Richard being accepted to to Hungary this summer
• My ability to continue to work
• Fatigue has gotten SO much better (I remember where I was a year ago!)
• Bloodwork better on some levels

Prayer Requests:

• Continued absorption on vitamins
• Continual ways to have these provisions met if this is the right path (these are an expensive portion of our monthly budget - about $1500/month)
• Funds for Silas/Richard mission trip to be covered with the remaining items and passports to arrive on time! (Still have to get them once we get that money)
• Continued stability on my brain.
• For God to show me the next steps - there are so many things I feel led to do right now and I'm trying to sort through what that means - clarity in the path...PLEASE!