Friday, September 23, 2016

Abide - the Forward Plan

To abide:

1. To wait for
2. To endure without yielding
3. To bear patiently 
4. To accept without objection

Over the last week, the word "abide" kept coming up in what I was listening to - Scripture, music, etc.

Last week, Jim and I started realizing that my recovery progress had slowed, even reversed in some aspects. Along with the meningitis head pain/fuzziness, my lupus has been out of control - joints, higher than normal fevers, fatigue, and severe stomach pain. The evenings have been pretty miserable. On Tuesday, I had an endoscopy done of my stomach (they stick a camera down your throat and take pics of your insides!). The good news is that the damage we thought might be there from some meds wasn't. The "bad" news was that the pain is due to inflammation of the lining around the outside of my stomach  caused by the lupus. That was the info we needed to call Rheumo Doc and press for a forward plan - I was done.

We met with Rheumo Doc yesterday and pretty quickly came to realize that my immune system has gone completely haywire. Rheumo Doc is also leaning towards the leftover meningitis pain actually being my lupus with Central Nervous System (CNS) involvement now. We're still not sure if my lupus triggered the meningitis or an actual virus, but the fact that the inflammation is lingering so long leads to the former. Lupus with CNS involvement includes cognitive dysfunction, vision and hearing impairment, pain, dizziness, stiff neck...all of which I am currently experiencing.

My immune system needs a reset.

The Forward Plan - Chest port and Chemo

So, next week I am going to have a chest port placed (it's a permanent IV that has a catheter that goes to a larger vein than the ones I have in my arms - my veins are completely shot after a few years of infusions and all the recent problems and it's been taking forever and many attempts to get an IV in me- the port will allow easy access for treatments and blood draws and can be removed when I no longer need it). Once the port is placed, I'll start on a 3-6 month round of chemotherapy.

Lupus is not cancer. Let's be very clear on that! However, chemotherapy works by suppressing ones immune system and mine needs to be be suppressed and reset so we can start over.

The chemotherapy that I will be doing is called cyclophosphamide (Cytoxan). It is one of the chemo treatments cancer patients get, however, I won't be taking the cocktail of harsher chemo drugs that cancer patients get so it is "shockingly rare" (Rheumo doc's words) that my hair will fall out. I will get the treatments once a month. Historically, lupus patients respond very well to this treatment and it has many people stabilize and even enter remission. It will be worth some rough months to potentially have an even better quality of life before all of this started! There's some bright hope for tomorrow!

Once the chemo treatments are completed, we will evaluate where my lupus is and maintain it with the same or different medications that I've used in the past. I am hoping that this will nip the current organ involvement (stomach/CNS) in the bud...and maybe even get me into remission (and it's been YEARS since I've been there...)

We're hoping that the chemo will settle the lupus, the remaining effects of the meningitis, and get me on the road to recovery and back to whatever the Lord has for us - we are so excited to be about His work and see how He will use what we have experienced to encourage and pour into others.

So the word "abide"... I realized that the description of my blog is from John 15. In that chapter, verse 5 states "I am the vine and you are the branches. Whoever abides in me and I in him, he who will bear much fruit, because apart from me you can do nothing." It's been staring at me since 2007.

I am just a branch on the vine.

I will abide in Him. I will wait for Him, I will endure without yielding, trusting Him, I will bear patiently by His grace, desiring His will, not mine. 

So, I'm sitting here, contemplating what abiding looks like, what that means for this season. And I am hopeful. Because He doesn't reveal these things and leave me hanging. He is SO very good to complete the good work He is doing in me, and in Jim through all of this. So I'll look to that peace that endures and the bright hope for tomorrow. For He is my hope.

"Abide With Me" 
(Audrey Assad version)
Abide with me, fast falls the eventide
The darkness deepens; Lord, with me abide
When other helpers fail and comforts flee
Help of the helpless, oh, abide with me

Swift to its close ebbs out life's little day
Earth's joys grow dim, its glories pass away
Change and decay in all around I see
O Thou who changest not, abide with me

I fear no foe, with Thee at hand to bless
Ills have no weight, and tears no bitterness
Where is death's sting? Where, grave, thy victory?
I triumph still, if Thou abide with me

Hold Thou Thy cross before my closing eyes
Shine through the gloom and point me to the skies
Heaven's morning breaks, and earth's vain shadows flee
In life, in death, o Lord, abide with me
Abide with me, abide with me

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