Update on the Next Step Re: Spine

Finally, we received a call from the UCLA neurologist today. She apologized for the lack of communication, and assured us that she hadn't called because she's been busy researching my very complicated case. She didn't want to call until she had the final piece of the puzzle.

Since the MRI was performed without IV contrast (because insurance failed to approve that), the results I reported about yesterday are not 100% certain. Next step? Actually re-doing the MRI with the IV contrast. Thanks, Aetna. Real smart. So, it ends up costing more. Once those results come in we will know how to proceed.

This doctor also mentioned the banding, or legions, in my brain. She's not certain that they are from radiation necrosis after all! That's another example of what I meant with always a diagnosis, yet never really understanding the true cause of the symptoms or test results. She mentioned that they could indicate GVHD or lupus. 

I also happened to visit my rheumatologist today whom I haven't seen in a long time. I was able to catch him up and he is going to do some extensive blood work and will also look at autoimmune disease as a possibility. He's also ordering a couple of x-rays of my knees, hops and pelvis to rule out any avascular necrosis which is dead bone from prednisone...the nastiest drug I have to take. Without it, the GVHD acts up and, if out of control, can be life threatening. It's just a catch-22 isn't it?

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4:16

Upon leaving the doctor's office I was walking to the parking lot with my walker and didn't notice a sudden sharp, yet small, decline and my walker left without me causing me to crumble. My body just went down onto my ankles, folding like an accordion. And once it started going, there was no brain communication to stop it, or pull myself up, or push my legs straight to prevent the fall. I laid on my side, and after the initial shock, I was able to move my knee and ankle and see that it wasn't broken. To get up, I had to get on all fours--knees, already in pain, pressed hard against the concrete in order  to leverage my feet underneath me with the aid of Mike and my doctor (who witnessed the fall and came to help) on either side of me pulling me up by the arms. I made it to the car and Mike and I split a nice meal at the Montecito Café before the pain really set in.

Hours later, I'm in a lot of pain, having a hard time bearing wait on my knee and ankle. If it's this bad tomorrow, I'll have to have it looked at...oh the timing! This was my week without kids to have a little fun with Mike out and, with his help, declutter and organize. I pray I recover quickly because I'm slow and laid up enough as it is, and even with the little I can do, my mind is active and I like to try, try, try.

Other than praying for my recovery/healing, you can pray that Aetna will come through on appeal Tuesday regarding a medication I've been on for over a year, need badly, and without it I will likely withdrawal. I ran out a week early because I had to increase the dose and even though the doctor wrote me a new dose prescription, they denied the pre-authorization. Tomorrow the doctor will appeal. If it fails, the next five days will be pretty tough. It's far too expensive (thousands) to pay out of pocket, especially because it comes in packets that are sealed in a box. You'd have to buy the whole month's worth.

I pray for YOU that you will be blessed this week in a special way for taking the time to care about me by reading my updates and praying for me. You are very dear to me!

The Ever-Ebbing Journey: not that, but this!

Here we go again! Always a diagnosis, yet never quite understanding the true nature of it or what remains undiagnosed. This afternoon, I received my copy of my most recent MRI of the lower lumbar. The UCLA doctor, who is an MS specialist, ordered this test as a final diagnosis differentiation as she had already ruled out MS and settled on Radiation Necrosis (brain damage from radiation).

I received the report too, and this was also copied to all my doctors. Yet nobody has called me about it. My only gripe is that I called and left a message with the ordering physician a week ago and she still has not contacted me. 

The results are ominous, saying a lot of gobbledygook that I had to look up, the MRI was taken without contrast because insurance wouldn't cover with contrast so I'll probably have to do that again. But the MRI did indicte spinal cord disease...something called "cauda equina for LMN syndrome." I'll let you look that up to find out what it means, but from what I've read it's pretty serious, like needing emergency surgery serious. Ugh. Causes are likely due to the bulging discs in the lower lumbar region, protruding 3 mm into the spinal canal, indenting the ventral thecal sac and contacting the L5 nerve root. Also there is lateral recess narrowing and borderline spinal canal stenosis. There are a few other findings, but I know less about them and will not bore you. 

When I looked up this condition, I find that it's a medical emergency and the earlier surgery can be performed the better the prognosis. How soon from onset of symptoms? Oh just 8-48 hours! That's when I cried. It's been a year and a half of the game of differential diagnosis and I'm losing. If only we could start with the most rare and emergent of diagnoses' then move up the line, instead of starting with the most mundane and moving down the line. I would have found this much quicker and could have prevented so much damage. Hopefully, it's not too late. But it feels like I need to find an excellent spine surgeon immediately. If you know of one within the L.A. to Santa Barbara area please let me know!

Of course, all of the above is based on what I read in the report and I know nothing except what I've read and not necessarily as it relates to my case. My real next step is to get in touch with the ordering physician, the neurologist at UCLA, but she didn't return my call last week. That's VERY frustrating! Until we talk to her there's no next step, but I still want the name of a good surgeon or spine specialist just in case because a year and a half of waiting, (well searching), has made things worse and I want to be ready for anything.

The NIV Bible puts Luke 1:37 this way, "For no word from God will ever fail." In the NKJ version it says, "For with God, nothing shall be impossible." Both are true and mean the same thing. It is God's word that I rely on because without it, without Christ's love, support and guidance, I'd feel pretty upside down and absolutely frustrated! I admit, I am frustrated, but not absolutely so.

From 2 Peter 1:2-3 

"Do you want more of God's kindness and peace? Then learn to know him better and better. For as you know him better, he will give you, through his great power, everything you need for living a truly good life: he even shares his own glory and his own goodness with us!" 

Long-Awaited Update, Part II

If you didn't get a chance to read Part I of the Long-Awaited Update, be sure to do that first! As promised:

I will continue in part II with what our new situation requires and invite anyone with the resources, knowledge or desire to help to join us in that endeavor.

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: 

Portable Air Conditioner - This was paid for with a gift from a dear sister--thanks B!

Hand Cycle Ecerciser This has been acquired - thank you, C! 

Sleep Number Bed - $5,400 - I was breaking ribs trying to get out of bed by pushing myself up with no use of my legs. This was the appropriate solution for me and had to be purchased so I could get some sleep instead of staying in the recliner uncomfortably in the living room with just a few hours sleep per night! I also need it to keep my feet elevated because of the inflammation. So using most of our savings we paid down to be able to finance the rest paying $75 for 3 years. And since it was for my specific need we went without all the features...in fact Mike doesn't have the ability to raise or lower his head or feet--the bed is split!

Hand Controls Installation in Car - $750 - I haven't been able to drive since January and my friend Donald who has Cerebral Palsy has been driving for years with hand controls! I'm not sure the cost of the controls themselves yet.

Electric Wheelchair - $1,200-$2,000 - I am using an insurance-grade manual chair that is difficult to push, and my arms aren't strong enough to do it myself. It would also be nice to be able to elevate my legs for long outings. $400 has been donated toward this expense so far - thank you!

Leg Compression Machine - donation promises have come in that provide for this much-needed machine! Praise God!  It came in today and I used it 15 min. and saw results already. I'll be using this regularly! Thank you!!!

CircAid Juxta-Fit Compression Leggings and Ankle/Foot Wraps - {$100 has been donated toward this need, 

but we are moving that to the above leg compression machine. Today, the doctor explained how this machine could help more while the leg wraps would come in handy for long days out when I can't put my feet up!}

Physical Therapy  - $??? - I haven't officially started this very necessary treatment so I don't know what I'm in for here.

Hearts Therapeutic Equestrian Lessons - $240-320/month - this is a dream that actually could help the brain-body connection and mind/body/spirit as well! Visit them at http://www.heartsriding.org/ride/about-therapeutic-riding/ to learn more about therapeutic riding!

IPad - $500-800? This is a requirement for Trevor's 9th grade year. It is not a surprise to us, but everything else has been so I thought I'd just throw this one out there in case you have one you're not using (not first gen. though per school guidelines). Or maybe you're a top exec at Apple and wish to donate one to him.

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:

Each of you should give what you have decided in your heart to give,not reluctantly or under compulsion, for God loves a cheerful giver. And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.

2 Corinthians 9:10-12 Now he who supplies seed to the sower and bread for food will also supply and increase your store of seed and will enlarge the harvest of your righteousness. You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God. This service that you perform is not only supplying the needs of the Lord’s people but is also overflowing in many expressions of thanks to God.

A Birthday Milestone and Long-Awaited Update, Part I

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.

      My first sunrise in years--a 5am birthday gift from Mike who is not a morning person!

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. 

2 Corinthians 5:9So 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

1 For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 2 Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, 3 because when we are clothed, we will not be found naked.4 For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life. 5 Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.

6 Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. 7 For we live by faith, not by sight. 8 We are confident, I say, and would prefer to be away from the body and at home with the Lord. 9 So we make it our goal to please him,whether we are at home in the body or away from it. 10 For we must all appear before the judgment seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad.

I will continue in part II with what our new situation requires and invite anyone with the resources, knowledge or desire to help to join us in that endeavor. Until then...God bless you

Milestone: One Year Since Second Bone Marrow Transplant

For those of you who follow this blog, detailing my journey of survival and hope, you've waited a loooooong time for an update! My apologies! It has been a year of whirlwind ups and downs, sometimes a step forward and two steps back. Isn't it supposed to be the other way around? 

Over several months I've been in and out of the ER most of the time for severe stomach upset, both vomiting and diarrhea, which caused a dangerous drop in blood pressure and dehydration. A couple times it was for a pain crisis and a couple times I was hospitalized for a fever that crossed the threshold of acceptability. 

The ups have been many as well. I've enjoyed getting to know new friends that have become very special to me. I've had the pleasure of getting to know Kim Newton who has generously given her time and energy to drive me so many times to City of Hope which lies 2 hours south. I can only drive 45 minutes at the most so this help has been so appreciated and lets Mike work instead of having to take off of work. Kim introduced me to Roxanne's A Wish and a Dream Quilt Shop and to the world of quilting! I made my first couple of quilts, a wall-hanging and a quilt top, took a class and am almost finished with that quilt top, another wall hanging which is a gift I have yet to finish, oh and many projects in my queue, which I hear is a common problem for quilters! I started with a bang, then got overwhelmed with fatigue and stomach problems and find myself resting and getting inspired, but unable to get it done myself! 

I've also had a great time getting to know various women of Calvary Chapel. I risk leaving some out, but have to mention new friends like Linda Laskin, Carolyn Wageneck, Mary Carty, and so many more who have given their love, prayers, gifts and friendship over the past year. There are some ladies who've given me all that who I don't even know! That's just the kind of community we have here in Santa Barbara at Calvary Chapel. I'm so thankful that even though this whole year I've been unable to attend church on Sunday (my family goes without me so I can stay out if large crowds), not only have I not been forgotten, I've made new friends who've reached out to me and whose fellowship keep me going! A month ago or so, Mike and I started going to a mid-week Life Group. It's been a blessing to feel connected to the church body again! And now that my 1-year has passed I can start to attend Sunday mornings again. Thankful to have the option to watch the service via live stream, it will be nice to worship in that space.

I'm on so many medications and they've really taken a toll on me. I don't look or feel in a way that I recognize. But they keep my immune system at bay (to prevent severe GVHD), my blood pressure down, my thyroid in check, they attempt to normalize my hormones (not there yet!), give me energy, reduce my stomach acid, increase my vitamin D, connect my nervous system, reduce pain and move my bowels! Ha, too much information! The thing I deal with most now is gastritis, or inflammation of the stomach lining. 

I recently had an endoscopy and a biopsy of four places in the gastrointestinal tract to look for GVHD. The good news is they found no evidence of it or of any infections. They've just determined my problems gastritis. Now I need to figure out what to do about that. Is there a certain diet that could improve it? Or is it medication side effects that won't improve until I can get off of them? I don't know, but I covet your prayer for a miraculous healing there. Add to that my second problem which is also inflammation, but all over and most notably in my feet, ankles and calves. There is no known cause as we've sought all possibilities through a variety of specialists. Insurance has not been covering things as well as they used to do and we are tapped out. So please pray for healing and that God would provide for my medical needs as He always has.

Two things I started that seem to help is gentle exercising at AC4 Fitness, working with a woman who is showing me what and how to do it without overdoing it so I don't have too many setbacks. The other thing is acupuncture! I found an excellent place called Downtown Community Acupuncture which offers treatments on a sliding scale from $20-45. It's so convenient with their online appointment setting and paractitioners available all day, everyday. With my level of problems, ideally I'd be able to go 3 times a week, but am stretching to afford 2 per week. I'll take it! I highly recommend this group if you have pain or any other problem, unspecified or not,

Yesterday was my one year anniversary which some call a new birthday, but since it is my son's 13th birthday as well, I call it my anniversary. He didn't seem to keen on sharing his birthday with me, not understanding what was meant by it, lol! Though as he headed off for school yesterday and I told him "Happy Birthday!" he yelled over his shoulder, "Happy Birthday!" twice to make sure I heard him. Too sweet!  

Finally, thank you to those who have shopped through my Amazon affiliate link in the sidebar on the right. Every little bit helps offset our costs and we appreciate your help! If you haven't already done so, please bookmark this link to return to it easily when you choose to shop at Amazon. Right click to save his link: Shop Amazon Now.

Day 56: Female?

Today Krista and I drove down to the City of Hope for a checkup. The labs show that the previous concern for her liver is not likely to be GVHD, since the results were better this time than last. Blood counts are good and the stomach pains she experiences from time to time don't appear to be anything serious. They're reducing her prednisone dose but not much else will change. 

On another note, Krista received a card today from the stem cell donor!  It was a very sweet letter (addressed "Dear little fighter heart") from a 24 year old German girl, just leaving university to "find her place in the world". We were so surprised because we had thought the donor was a young male. So now Krista has a new blood sister! The communications between donor and recipient are regulated so we don't know her name yet. Eventually when it is allowed (in about 2 years) we would love to meet her.

So much happened today, and we are so grateful to everyone for their kindness and generisity. My work held a bake sale to raise money for ongoing medical expenses. We couldn't be there but it looked like a very good turnout. Also, special thanks to Kim and Maya for their friendship and extra dose of love shown to Krista today. The Lord has been so good to us. 

Shout for joy to the Lord, all the earth. 

Worship the Lord with gladness;

come before Him with joyful songs. 

Know that the Lord is God.

It is He who made us, and we are His;

we are His people, the sheep of His pasture. 

Enter His gates with thanksgiving

and His courts with praise;

give thanks to Him and praise His name. 

For the Lord is good and His love endures forever;

His faithfulness continues through all generations. 

(Psalm 100)

Day 53: Two Days

I was too tired last night to blog, so this is a two day summary.

Krista's visit to the City of Hope went well, though there were some adjustments that have to be made to her medicines. The labs are showing that her liver enzymes have increased unexpectedly. She had an ultrasound taken on her liver, looking for signs of GVHD activity - and while they were at it they continued on to ultrasound her stomach, gall bladder, and kidney. There was nothing unusual to report, though it is possible that there may be some GHVD in the liver that is just too small to report. They're increasing her ursodiol dose to better protect the liver.

One of the other medicines she takes seems to be causing a problems now since her triglicerides have increased. It's a known complication of the rapimune, an immune suppressant. They reduced the dose she takes of it since she's going to need to be on it for about 6 months. It's just another medicine that it's important to get the correct dosage for.

It was nice to have Michelle around for the trip down to City of Hope. (Thanks again for driving, Michelle!) The picture is of Krista and Michelle having a good time waiting for the valet to bring the van when they were ready to go. Things got a little complicated at that point because our van's battery had drained in the parking lot and the van wouldn't start for the valet. Fortunately, he was able to jump start it and the van seems to have recharged after the long ride home. At least it restarted easily today when we went off to see Trevor sing with his school choir. What a beautiful event. We're starting to get in the Christmas mood.

My cough has started back up in the last couple of days, and Trevor's started coughing too. We're trying to give Krista plenty of space to minimize the chance of her catching it too. Praying for healing for everyone here!

And He said, “If you will give earnest heed to the voice of the Lord your God, and do what is right in His sight, and give ear to His commandments, and keep all His statutes, I will put none of the diseases on you which I have put on the Egyptians; for I, the Lord, am your healer.”
(Exodus 15:26)