Chemo again

Susan started chemotherapy last week after Wednesday’s MRI showed her brain tumor has grown compared to earlier scans. The good news is it doesn’t appear to be growing quickly – viewing the current scan next to one several months ago shows only a slight difference. But the growth is clear when comparing this MRI to last year's, or this month’s PET scan to the one in 2009. To my untrained eye, the tumor area looks to be 15-20% bigger than before. It’s also clear especially on the PET scan that the “new growth” in her right hemisphere is not new and separate tumor tissue, but an integrated part of the mass.

Dr Nghiemphu recommended Susan start another round of chemotherapy now, not because it’s urgent, but because there’s tumor growth that needs to be treated. She’s also been paying attention to Susan's symptoms, not relying on visual evidence alone. She relates Susan's headaches last summer and cognitive lapse this fall to tumor growth. After discussing Susan's treatment options with us, we agreed with her recommendation to start monthly infusions of Carboplatin. Starting right away gives her time to bounce back before Thanksgiving and get December’s treatment done before the holidays.

We returned Thursday for chemo and got reacquainted with UCLA’s infusion center for the first time in about two years. Nurse Nikki fit us in to the schedule and gave us the run-down on Carboplatin. She calls it good, old-fashioned chemo. I’m thinking “hand crafted by local artisans in small batches for cancer patients with discriminating taste.” Actually, taste has something to do with it – one side effect is a metallic taste in the mouth since it’s a by-product of platinum. The drug has been in use since the 1980s for ovarian, lung, and head & neck cancers. Other effects include nausea & vomiting, slight hair loss, and neuropathy. It’s expressed through the kidneys, so Susan has two 32-ounce water bottles to drink each day to get rid of the toxins.

So far, she’s doing okay. She needs more rest than usual, but has been feeling well otherwise. We’ll be getting labs every two weeks to check for low white cell counts and kidney & liver function. Since chemo effects are cumulative, any problems are more likely to appear in future months.

As normal as life has gotten for us these past couple of years, the realities of brain tumor world still proclaim their presence, and not merely in Susan's latest tumor growth. There were just a few of us in the oncology waiting room at UCLA late Wednesday after we’d returned from Susan's MRI and were waiting to see the doctor and view her scan. I noticed two other couples, brain tumor patients and their caregiver spouses like Susan and me. After a few minutes, a nurse called one patient to the back for his infusion. A man who had looked pretty normal just sitting there struggled to rise after his wife stood up, then hobbled toward the infusion center with horribly spastic movements. That poor man, I thought. Look what brain cancer has done to him.

Moments later, my attention turned to the couple in front of us, a wheelchair-bound woman and the man attending her who appeared to be about 40 years old. She looked much older and had trouble speaking as he asked her if she wanted some water. Several times. He struggled to understand her and stepped away to refill her water bottle. She sipped from its straw when he returned, then labored to get his attention again. “Do you want to go to the bathroom?” he asked. Her reply pained me as she waived her arm up and down – “Gaaah.” He wheeled her toward us before turning down the hall. I saw the eyes of a 40-ish woman, evidently his wife, who appears fifteen or twenty years older. That poor woman. That poor couple. Look what brain cancer has done to them.

This Thanksgiving I’m thankful for Susan and for her remarkable progress over these four years. I’m thankful for her, her playfulness, her positive attitude, and her beautiful faith. We’re thankful to God for his presence, his love and faithfulness, and his gift of life. We’re thankful for our kids, each of whom is discovering their identity in Christ and learning to trust him more. We’re thankful to family and friends who pray and who stand with us to help in immeasurable ways. God has given us grateful hearts and the perspective to see our lives through eyes of grace, which helps us deal with our hardship. We’re thankful.

PET scan shows tumor growth

We learned from Susan’s recent PET scan there seems to be a little more tumor on the right frontal lobe compared to a similar scan two years ago. Her neuro-oncologist has been watching this newer tumor area for a while and now is inclined to start treatment, probably chemotherapy. Since she’s scheduled for another MRI in ten days, we’ll look for any changes next to the scan from early October and decide on a game plan. Dr Nghiemphu floated the idea of Susan going back on Temodar, the first chemo she had in 2007. It was initially effective back then; and she tolerated it well.

Knowing tumor progression tends to be a matter of time with GBM, I asked the doctor a couple of years ago when Susan was doing well what treatments remain for her if and when it begins growing again. She said there are several other chemotherapies available, including one or two she has in mind that might work for Susan’s cell types. It’s comforting to know there are more tools in the bag. However, additional surgery and radiation are apparently out of the question on the right side for Susan since she’s already had them on the left. If the right side of her brain has been compensating for trauma on the left by doing more work, we can’t risk her losing function under the strain of such focused treatment. But she may be eligible for experimental, targeted therapy like a clinical trial vaccine if needed. We’ll see how it goes. Meanwhile, Susan feels well and has improved over the past month, perhaps from a slightly higher dose of the steroid Decadron.

We’re not prone to panic or despair; but this is the first such reversal Susan’s had in over two years, so it’s unnerving. Naturally, I want to answers for unanswerable questions, like what will happen next? And how long will Susan live? It helps to know they’re unanswerable so I can move on. Instead, we turn again to God who loves us, who made us, who has good plans for us, and who knows the number of our days. We turn to his ample supply of grace and peace, resources that have become more real and satisfying than we could have imagined. We also turn to his word, again and again, like where our friend Peter tells us:

In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith — of greater worth than gold, which perishes even though refined by fire — may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. 1 Peter 1:6-9

What if there’s purpose to our trials and a future brightness from them that blindingly outshines their present gloom? The thought is liberating and life-giving. It’s even exciting. I believe it’s why Susan is so looking forward to Heaven; but it has great implications for the rest of our lives on earth. As we trust God and pray for Susan’s healing, we also thank him for his gift of hope. I think it must be some of the most powerful stuff there is.

Another PET scan

We went to UCLA today for Susan’s DOPA PET scan so we can know more about the spot we’re watching on her right frontal lobe. She was injected with IV fluid, waited a few minutes for the stuff to get through her bloodstream, and went into the CT scanner for about a half-hour’s worth of pictures. The IV fluid was radioactive, so we won’t need to turn on the nightlight this evening. My wife has a lovely glow about her.

She had a DOPA PET scan about two years ago, and was fortunate to get on the machine this week – the first the first since it’s been operating again following a five-month repair. We’re so glad to have this technology available as a way to get a diagnosis without a surgical biopsy. 

As I filled out her intake form for the folks in the nuclear medicine department, I had to refer back to Susan’s health history page I created when I could no longer reliably recall all of the procedures she’s had in recent years. To abbreviate, she’s had breast cancer, brain cancer, twelve surgeries, four other hospital stays, seven admissions through ER, radiation therapy and three rounds of chemotherapy. It’s kind of a stunning list and would be hard to believe if I hadn’t been with her to experience it. But what’s even more amazing is the peace God has given us along the way and the peace that rests with us in our circumstances. It's a full-time, no-matter-what peace. A life-giving peace. While we haven’t been able to control cancer, cancer hasn’t been able to control us, crush us, or defeat us. The supreme, supernatural victory God gives us means it never will. That’s why we’re grateful.

A spot to watch

After moving up Susan's scheduled two-month MRI by a week out of concern for what’s causing her increased confusion and fatigue, the scan yesterday revealed a new spot on her brain. It’s small, about 1 cm in size and does not appear to be growing quickly. It's located on the right frontal lobe near the ventricle (the original tumor site is on the left). It’s not necessarily new tumor growth and may not be what’s causing her symptoms. It’s neither great nor terrible news. It’s a spot to watch.

First appearing on her scan in August, it was too soon to conclude it was anything but a suspicious angle change compared to the scan in June. From scan to scan, the “slices” of digital images don’t match up perfectly with each other. Now we know the spot is definitely there and appears to have grown a couple of millimeters – not an alarming change. If it’s tumor tissue, there may be unseen tendrils growing; but there’s no way to know that right now. A biopsy would be premature and unnecessarily invasive. Likewise, chemotherapy at this point would be hasty given its side-effects.

She’ll return in five weeks for an MRI of her head and neck, as well as an F-DOPA PET scan. Susan had one previously in July 2009 as part of a diagnostic study requested by neurosurgeon Linda Liau. I’ll skip the five-syllable word that DOPA stands for – but a PET scan is another imaging tool that can lead to a quicker and more accurate diagnosis. We’re thankful to be associated with UCLA at times like this since they have one of only three such machines in the country.

Meanwhile, yesterday’s scans also showed the persistence of brain swelling that Dr Nghiemphu said is most likely radiation effect from 2007. The swelling hasn’t increased, but it’s still there and is most likely the root cause of headache and its related troubles. As a result, we decided it’s probably not possible for Susan to stop taking steroids altogether. We raised her Decadron dose from a taper to 1mg daily so it can be effective against swelling and relieve her from taking pain meds. We’ll see whether her recently increased confusion and fatigue may be relieved as well.

As I said, discovering a spot to watch is not good or bad news, but I admit to a heaviness that comes with interrupting the improvement Susan has enjoyed for most of the past two years. It’s a reminder that aggressive brain cancer is not presently curable with modern medicine and tends to grow over time. We cannot will it away; although God may, so we pray for healing.

As we viewed Susan's MRI yesterday, I noticed how visibly large her stroke area is in the left occipital (rear) lobe of her brain. It’s probably 2-3 inches both wide and long. The stroke occurred sometime between her seizure on July 3, 2007 and when she woke up after brain surgery on July 5^th. It caused the right-side visual field loss and right-side weakness that affect her today. Susan has been through so much. The brain images document her grueling battle with brain cancer – the stroke, the aneurism, the tumor cavity itself; and now the new spot to watch. Still, we trust God in all of it and desperately want to be obedient to him on this journey. The Apostle Peter writes to us in 1 Peter 1:2, “Grace and peace be yours in abundance.”  We’re thankful we’ve got loads of grace and peace. And we’ll take more.