Tuesday, July 14, 2015
If you didn't get a chance to read Part I of the Long-Awaited Update, be sure to do that first! As promised:
As I mentioned, having radiation necrosis has been a very difficult diagnosis in that I have lost so many abilities--let alone having to forgo many dreams I had waiting for the day I'd be recovered enough to attempt them. I also pointed to the importance of pleasing the Lord as our primary goal which takes the pressure off all that wishin'!
But with the loss of abilities--things you completely take for granted until you lose them--come a multitude of life changes and alterations just to keep going in this world. It would be truly overwhelming if I wasn't so sure that God would provide for all our needs, but He always has provided no matter what road He's led us down. Since I am in no shape to have a fundraiser, I'm just going to list what our needs are so you can join us in prayer specifically and perhaps you have one of these hanging around not being used or wish to donate toward the expenses. If you do wish to donate you can click on the established Paypal link on the top of the blog or send a gift to 5069 Oleander Pl., Santa Barbara, CA 93111. These items are above and beyond the regular and ongoing medical and prescription bills.
Items listed are in no particular order, just as they come to mind, and with estimate if know:
Seems extensive, I know, but I also know that "nothing is impossible with God!" I might put this on a Go Fund Me site as encouraged by friends to do so, but again, I really appreciate your specific prayers regarding these items and I'll post photos of the item when we acquire them.
One more thing to help Mike out: Our dear friend Katherine Marton created a meals calendar for those who are local and wish to provide our family a meal. One can sign up for a Tuesday, Thursday or Saturday. The calendar is now through Meal Train. Here's the link to our calendar: https://www.mealtrain.com/trains/0z49v5 (copy and paste--Blogger changed how to format this stuff and I haven't figured it out yet!)
2 Corinthians 9:7-8 is fitting for such a post as this:
Monday, July 13, 2015
Today is my 44th birthday--the anniversary of my physical body which the Bible refers to as a tent--one that is wasting away on the outside, but inside is being renewed day by day. (2 Corinthians 4:16) This inner renewal is true for every believer in the Lord Jesus Christ as their personal Savior, so if you haven't already put your trust in him ask me or another Christian in your life to share with you more about that.
Without the hope of Christ, what he's done and who he is, I don't think I would have made it this far through the sufferings of the last 10 years, especially of the last year and a half. If you followed my journey from the start that might comes as a shock to you because you know the first transplant I had in January of 2009 was pretty traumatic, receiving massive amounts of chemo and radiation and spending nearly 3 months in the hospital because of my organs shutting down then an induced coma that had me in ICU for 2 weeks. But this second transplant was harder in many ways. First the news of it was harder because it was just so unexpected where the first relapse I had was sort of expected. Also I switched hospitals and doctors so the City of Hope does things differently, taking your case in front of a board who decides which cases they can take based on probability that the "case" will survive long term. Waiting to hear my fate, whether transplant or hospice, was very difficult.
The 2nd transplant itself was easier in that the pre-conditioning was less intensive, theorizing if they'd thrown everything at the leukemia the first time, and still a rogue cell or two were left behind hiding somewhere to proliferate, then this was a very aggressive form and that treatment wouldn't work again. So my only hope for more years was a transplant from an adult marrow, or stem cell donor. Thankfully, I had a new pool to draw from and had many matches this time. Recall with the first I'd waited 4-5 months and had to get an unmatched cord blood donation from Aulstralia. This time my donor was a young female college grad from Germany.
What has been more difficult this time around wasn't the transplant itself but the recovery period. I had the 2nd transplant on October 30, 2013, my youngest son's birthday. I was home by Christmas. Things went along ok, but within 6 months, my foot began swelling very large. Then it spread--first to the other foot, then up both legs. I have inflammation all over now, head to toe. I have sought potential medical reasons for it which has led from one thing to another. I'll spare you the details, but here's what I've found out in regards to my challenges over the last year:
*most of what ails me is a result of the treatment for leukemia, the pre-conditioning to receive a transplant, GVHD and the side effects of medications taken to reduce GVHD or prevent rejection.
*osteoporosis due to long term prednisone use found out after spontaneously breaking ribs. Also found more broken ribs after falling on my back. Ribs are healing nicely now. I am required to get an infusion of Reclast once a year to replace bone loss. Getting off prednisone is a goal, but remains very difficult to do.
* I also have prednisone-induced diabetes which I control through diet and Metformin.
* the worst thing I'm dealing with though, and have been for the last year as it progressively worsens, is a partial paralysis of my lower half. I can no longer walk, or do so with a spastic gait with use of a walker around the house. Outside the house I need a wheelchair because I don't last long with the walker. This has proven a most difficult adjustment. The cause of this is NOT muscle weakness, but it stems from the brain's communication center. On an MRI, there shows lesions in the white matter that represents damage done by the full body radiation I received in 2009 for my first transplant. Called "Radiation Necrosis," this damage is permanent and has been a source of discouragement for us. It means I lack abilities I once took for granted, like going to the bathroom when I want. Now I cannot feel the signals so have to plan accordingly. It has also caused some comprehension and memory problems as well as attention deficit problems which is why I haven't been blogging.
There are a couple of treatment options. One is use of the hyperbaric chamber. However, I have too much inflammation to use that. Imagine going up in an airplane with a cold times 100. No way! The other is an infusion of Avastin found to help some with radiation necrosis when it was tested for killing brain rumors (that didn't work unfortunately). So I have to get with a neurologist-oncologist. I also have to get one more MRI of my lower spine to see if there is another reason going on in addition to the necrosis that would cause the crazy inflammation. Pray for me for the God's healing power of restoration or the grace to live with this condition for many years.
So, that's what has been going on with me. That and a lot of grieving. Recently though God has been really ministering to my heart through the gift of gold He's given me --my dear friendships! He's shown me Scriptures I've read many times but have only seen them now with fresh eyes as I needed them most. I had been letting myself get caught in the trap of self-pity and regret. Since I've lost so much I regretted all that I had not done and now cannot do. But now, I realize that my real aim is to please the Lord in every action and thought.
So we make it our goal to please him, whether we are at home in the body or away from it.
While I've heard this term, "pleasing the Lord," it was never so clear that it is to be our great focus until I saw it in the above verse. It has already freed me up to love more purely and to remain joyful despite my circumstances. No longer do I reside in trying to please myself or others around me. That only left me quite miserable! Instead, I feel I can see more clearly, experience joy more fully and love others with the goal of merely pleasing Christ.
I'll leave you with the whole passage that blessed me so:
2 Corinthians 5:1-10