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Tuesday, January 26, 2010

Continued stability

Susan has been doing well following her fourth dose of CCNU chemotherapy after waiting a week to see if her blood counts improved. They did, so she took her chemo pills at home on January 14. She was moderately more tired last week, but came through without nausea or vomiting. She takes Zofran for a couple of days after chemo to prevent nausea that seems to do its job well. The next side effect to watch will be in mid-February when she resumes weekly blood work prior to her next scheduled exam and chemo toward the end of the month. Drugs like CCNU tend to knock back the body's vital blood cells 4-6 weeks after having them; and each cumulative dose makes it harder to bounce back and raises the possibility of needing a transfusion. The complimentary alternative treatments she has three times each week with our chiropractor may be part of the reason she's holding up well so far. Dr Jim Augustine provides her with bio-cranial adjustments and electromagnetic pulse therapy; plus she takes daily supplements to support liver, brain, and digestive function.

We are grateful this continued period of stability. This week marks one year since Susan's brain hemorrhage and her last hospitalization.  This is by far the longest period of time without a hospital stay since she was diagnosed over two and a half years ago.  Having twelve months without a major medical event and its atrophy of inactivity has helped her gain vital strength. We also know many people continue to hold us up in prayer.  We are ever aware that God is keeping us in his care.
 

I chatted briefly with a patient I met at the chiropractor's office who apparently is familiar with Susan and asked me how she is doing. I said she's under continuing treatment for a brain tumor, but she's hanging tough and doing pretty well. At times like this I try to reflect the realistic optimism we've adopted. I do not choose to speak from gloom, that she has a malignant brain tumor with a two-year average life expectancy and a 100% eventual mortality rate. Nor do I choose to convey a false cheeriness that God will heal her since we know he can, but don't know if he will. That's a lot to blurt out, but it's contained in my response – yes, brain tumor; and yes, okay. But the kind man wanted to know more. How are WE doing?
 

I shared that we are doing okay, really. We are Christians and we trust the Lord. Yes, we trust the Lord he conceded, but what are we doing? I asked the kind man what he meant. He wanted to know if we're doing everything we can, pursuing every treatment – did we know about Dr Burzynski in Houston? I said I knew about Burzynski's claims and some of his successes and controversies. Ultimately, Susan was not eligible for his clinical trials since she'd already had surgery and radiation. The kind man wanted to know why surgery didn't fix it. I spoke of tendrils and aggressive brain cancer – it grows back. Then he said his wife had died of cancer eight years ago, and I understood. He couldn't fix it for his wife. He said you think you're ready for it, but you really can't be. The kind man still grieves.
 

I had to go help Susan from the treatment room, so I assured him we're pursuing every medical option available to us, and we also trust the Lord with our lives. We just do. Every day is a gift. Peter writes about living in "the tent of this body" (2 Peter 1:13) and receiving "a rich welcome into the eternal kingdom of our Lord and Savior Jesus Christ" (2 Peter 1:11). If we did not own that perspective, I'm pretty sure we'd be living in despair. So we continue to hope for the best, and in faith we are ready for anything. For now, God is keeping us and giving us his precious peace.

Friday, January 8, 2010

Some chemo effect and tumor activity

In spite of her generally stable condition, Susan's latest round of tests revealed a few areas of concern along with some recently increased headaches. The first of three blood tests beginning the fourth week after last chemo showed her platelet count dropped to 15% of normal, nearly low enough to require a transfusion. Since platelets are a clotting component, the risk for Susan would be another hemorrhage or spontaneous bleeding in her brain. With these results arriving when her week 5 test was due, I took her to UCLA on Dec 30 instead of a local lab so we'd be in place in case she needed a transfusion. Fortunately, her platelet count had reversed trend and doubled, although it still was too low to resume chemo at that level.
We returned to UCLA this Wednesday for her week 6 labs, MRI, and oncology visit. While the good news was that her platelets that had rocketed back to 100% of normal, her white cell count took a hit from the prior week. White blood cells are immunity soldiers that combat infection, so chemo remains on hold this week. These blood-count hits are the result of three doses of CCNU chemotherapy since September, although the effects actually occurred a bit later than expected. (My Susan is a strong woman.) She'll have another blood test next week to see if her counts have recovered enough to resume chemo. We have the pills at the ready.
Her MRI showed greater contrast compared to her two most recent scans, a sign that tumor activity has increased a bit – but thankfully not a lot. Dr Lea believes continuing CCNU will be effective for now and has other treatments in reserve when needed. The scan also showed increased brain swelling, explaining Susan's more frequent headaches. The doctor thinks it's caused by our attempt to reduce her steroid dose since last time, so we're bumping her back up to the nominal 2mg Decadron daily and will leave the taper fight for later. We remain thankful for the excellent care at UCLA and for Susan's continued stability overall.
I corresponded this week with a former co-worker who is also a Christian and in her own battle with advanced breast cancer that has spread to other parts of her body. The way she's holding on to hope in God stirs my admiration. I noted the remarkable similarities between Susan and her. Each has had several courses of treatment for life-threatening cancer, each is presently stable but medically incurable, and each is committed to wait on the Lord in faith. I did my best sum up our state of mind and spirit since Susan's GBM diagnosis 2 ½ years ago:
"Also like you, we trust the Lord with our lives and the outcome of this journey. We've learned that in spite of our troubles God still is good; and in fact his faithfulness is what sustains us. We've discovered the preciousness of suffering that allows us to appreciate the gift of life each day. What power do we have anyway but what God gives us? On one hand, we know what he is capable of doing. Healing from cancer is not a problem for God the Almighty. Yet we also live in a fallen world with the mystery of his will and accept the best plans of God the Sovereign. So, we pray and ask for healing, pursue every medical option, and take each step as it comes. We trust God completely, are hoping for the best, and are ready for anything. Ultimately, heaven will be a much better life for all of us!" This world is not our home.