Continued tumor stability and more steroid adjustments

We are giving thanks once again for another good MRI on Wednesday showing continued tumor stability. Is this God hearing and answering prayers? Is it effective CCNU chemotherapy twelve months ago? Is it great results from ongoing therapies with chiropractor Jim Augustine? Is it Susan’s dual Grade III & Grade IV cell types responding well to what we’ve thrown at them? The answer is yes in general – and God is keeping us overall. We’re just thankful.
 

As we reviewed Susan’s recent steroid withdrawal with Dr Nghiemphu, she cautioned us that Susan’s natural production of cortisol probably will not resume, so replacement steroids may be a permanent remedy. I didn’t know this was a possibility, but I guess it makes sense after 3-4 years on the drug. While we haven’t ruled out another attempt to taper off, for now we’re shifting from Decadron to Prednisone since it’s milder and has fewer side effects.
 

Susan faithfully mugs for me at Junior's Deli before we nosh.

We also discussed Susan’s painful and swollen lower legs that came on with the last taper and the possibility of a blood clot in her right leg – she’ll have a Doppler ultrasound scan tomorrow. We left Westwood with a lunch stop at Junior’s Deli and were greeted by owner Marvin Saul when he checked in to make sure our meal was okay. It was. He’s a nice man.

Like I said, we’re thankful. Nothing’s changed medically speaking about Susan’s brain cancer being incurable or the expectation it will progress again someday; but with each two-month span that passes with stable MRIs, we have more time for Susan to get physically & mentally stronger and for us to enjoy the gift of life together. If she were cured tomorrow and we resumed our former lives to accumulate anniversaries and silver hair, we’d be living with a greater sense of God’s presence and the awareness that earthly life is temporary and Heaven is our home. We’re doing that anyway.

Mystery solved and the art of dying

We’ve pretty well resolved Susan’s mysterious symptoms of late last month (nausea, confusion, leg swelling). Although I’ve been waiting to know the results of her latest blood work, for now we’ll chalk up the episode to steroid withdrawal. More importantly, she’s feeling better and didn’t need any intensive treatment.
 
Even though her ½ milligram of Decadron daily was already a minimal dose, evidently dropping to just two days a week was too much after 3+ years on the drug. We restored her to ½ mg daily as a precaution when her symptoms arose, but suspected a more troubling problem and had a number of doctor visits and tests.
 
She’d begun to improve by the time we saw her infectious disease doctor, who thought the steroid withdrawal scenario made sense. Her episode began about a week after we’d trimmed her dose; and tests were ruling out serious things like kidney failure and congestive heart failure. The doctor ordered another blood test to check electrolytes and confirm his thoughts. I still haven’t heard back with the results, but when she got better I didn't pursue it. Some health issues go away without a complete explanation, like my New Year’s chest pains. If you can rule out a menacing problem and just move on, that’s a good outcome.
 
I wrestle with a great sadness in the recent death of my friend and former employer, Steve Anderson, who passed away from cancer on February 3rd. We pray God's comfort for Cathy and their children as they grieve. At Steve's memorial service on Saturday, a packed congregation celebrated in a way that faithfully represented his life. As one speaker eloquently put it with friendly ribbing, Steve was a “PIL.” It's a fitting acronym. His life was marked by Passion – for God, for his family, his friends, his basketball teams, and his cars. Steve had Integrity – he was consistently the same Steve in each facet of his life. And he Loved well, as any object of his passion can attest.
 
Steve also died well. He was secure in knowing he belonged to the Living God in life and death, so the thought of dying came with peace for Steve, not fear. He still was fighting to overcome cancer in mid-January when I last visited him. But his fight came from a desire to live, not from a fear of dying. There’s a difference. 

The past few months had not gone well for Steve as his body had been increasingly unable to overcome the advance of disease and the harshness of treatment. The prospect of him passing away was sort of heavy in my mind as we chatted alone in his bedroom and he reclined under blankets to warm his thinning frame. We talked a few minutes about recent treatments, then I asked Steve how his spirit was. He said he was okay. Truly, he was. I witnessed no panic, anger, or frustration, but sensed the recognizable peace that comes from God when you know you’re in his hands. I asked how I could pray for him. He said he wanted to get well and become productive again. Steve was dissatisfied with the thought of living with a long-term illness and not being able to provide for his family. He wanted to live. We prayed he would live. But he knew dying meant he'd be with the Lord. His faith assured him it would be a greater existence.
 
Last autumn I read a remarkable article in The Wall Street Journal called, “Halloween, A Christian Perspective,” written by Rob Moll and taken from his book, The Art of Dying. It's a book I am now more eager to read. Moll used the occasion of Halloween to point out that our present age with its deep fears of death and dying was preceded by ages when Christians practiced the art of dying. One 17th Century author wrote a book on “holy dying” that was a natural extension of living a good life. Methodists in the 1800s called it “the happy death,” where death is unwelcome as it is now, but expected; so we may as well live to prepare for it. Moll shares an example:

In his book "Facing the 'King of Terrors,'" the historian Robert Wells quotes the 1824 obituary of Daniel Vedder, a man in Schenectady, NY: "His last days exhibited a scene peculiarly striking. . . . He expressed the most cheerful resignation to the will of his heavenly father. . . . It was observed that as he approached the hour of his death, his views of divine subjects [angels and spiritual beings] became increasingly clear."

Vedder's death illustrated the basic elements of the beautiful death. In it, family, friends and neighbors surrounded the dying person. He asked forgiveness for wrongs he had committed and forgave those of others. He confessed his love for each person and offered last words of advice or encouragement. Lastly, the dying person expressed his belief in life eternal and sometimes even described visions of that future realm. Loved ones — whether family, neighbors or church friends — were expected to be present as comforters and witnesses.

Jesus' work on the cross defeated death for us. The death we no longer have to fear is worse than annihilation – it’s an eternally regrettable separation from God. Jesus’ resurrection secured eternal life for us and earned us a place with him by grace. Until we cross over to that place and the God we will behold replaces earthly faith, what Jesus did gives us hope. Our hope makes a beautiful death possible. Our hope was strength for Steve Anderson as he was dying, and brings comfort into the void of his absence. Our hope is absolutely life-giving for Susan, our family, and me as we continue to navigate her brain tumor journey, and it makes us always thankful for the gift.  

You can read Rob Moll’s article here: http://robmoll.com

Please pray for Hank Zavaleta

Our dear friend Hank had tough news this week as he continues his fight with GBM as you’ll read in this update from his wife Cris. Please join us in praying for Hank:

Well, honestly, I don't know where to begin.
Thanks to everyone for your continued love, support and prayers as you are traveling this journey with us. We are so Blessed to have the family and friends that we do.
With that said....Today’s MRI was not good...actually, it was real bad. In the past 6 weeks since the last MRI there are 3 areas of concern... The left temporal lobe, the left basal ganglia and the Left parietal lobe..All have regrowth. The left temporal lobe growth is pushing on the motor skills area, which will take away the ability for Hank to walk.
So, we, with Dr. Cloughesy decided to start a new chemotherapy tonight. This MAY slow the process down and has a 15% cure rate. Yes, 15%! :( It was that or do nothing. We chose to try one more time. This chemo is taken orally for 28 days, then 7 days off. His labs will be checked weekly for low blood counts. If they fall too low, he will be taken off. These tumors seem to be very aggressive, since 6 weeks ago they were not there and have grown substantially.
As you all know, Hanks prognosis has never been good, but he has always fought hard and today’s news was just hard to take. He isn't giving up and will continue to fight as long as he can. I don't want to sound negative because that is just not me, but the new prognosis is hard to handle right now and I know you want and should know what we were told......Dr. Cloughesy with tears in his eyes told us that Hank possibly has another 6 months ... with or without chemo. I am sorry to have to tell you this news.  With much love, Cris