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.

A bit of a slip

Susan’s had a bit of a slip lately that’s caused enough concern for us to move her scheduled MRI up a week so we can know if she’s had any tumor growth. The past six weeks offered a time for her to finish her kidney stone treatment with smooth results and for me to focus on working as much as possible to try and shore up our finances.  When she began feeling more fatigued and confused a couple of weeks ago, her symptoms seemed to point to another urinary tract infection. We might expect as much after having her kidney stones laser-blasted. But last week’s labs came back negative for bacterial cultures and her symptoms continue, so we must return to the possibility of cancer growth. We know God has sustained us all along and we continue to trust him through uncertainty as we ask for healing. We are grateful for everyone’s prayers also.

We did arrive at an answer for her mysterious headaches last summer, settling on Vicodin “rebound effect,” a form of dependency from long-term use. We’d already dealt with “chasing the dragon,” as our drug dealer – er, pharmacist put it. That's when you need a greater dose of an opiate to get the same level of pain relief as before. I remember when half a glass of chardonnay on our anniversary would make her feel like having a nap, so when the severe pain of brain swelling came upon her in 2007, one Vicodin took care of it if Tylenol didn’t. Four years later, she’s needed two instead. Although her level is way below that of a serious abuser or addict, it’s still chasing the dragon. Evidently, Michael Jackson did this in the extreme.

With rebound effect, long term use of a drug like Vicodin results in a headache not because of a problem like brain swelling, but because she’s not taking Vicodin. For the past month or so, we’ve been in the process of unwinding it by substituting a skin patch coated with a drug called Fentanyl to provide a base level of pain relief. It’s relieved her of taking Vicodin constantly, while Tylenol or maybe one Vicodin now suffice for occasional breakthrough pain. Clearly, medical treatment is a complicated thing. The drugs that meet a need during crisis can become a drawback themselves, as we’ve seen with her steroids as well. I’m sure we’ll need to wean of Fentanyl next.

My mom asked this week whether Susan’s doctors have said anything lately about what might happen next with a patient like her. I said the last time I asked her neuro-oncologist was three years ago or so when Dr Nghiemphu said her prognosis was “guarded.” That’s an appropriate answer since she is neither in remission nor imminently dying. She’s guarded. What Mom really wanted was to ask the questions I had the day Susan was diagnosed: What will happen next? How long will she live? The answers are not answers, they’re just acknowledgements. We don’t know. We don’t know.

“We don’t know” is the stuff of a cancer journey because it’s uncertain by nature. Now to coping with it – God is our ever-present help. Our faith in him and in his good purposes for us actually needs uncertainty to grow and become meaningful. If uncertainty is the stuff of a cancer journey, trusting God through it is the stuff of faith. God’s Word is loaded with examples of people who’ve had to forge ahead when faced with monumental uncertainties, but Abraham comes to mind in particular.

After God had promised to make him into a great nation through his offspring years and years earlier, he found himself a childless old man with an old wife well past child-bearing age. When they finally brought a son into the world in miraculous timing, God asked Abraham to sacrifice the young Isaac on an altar in the wilderness. Talk about uncertainty! To obey would mean taking part in a barbaric act that seemed out of character for a God who esteems human life, and would eliminate the very means for Abraham to become a great nation. What about God’s promise? Yet in faith, Abraham raised a knife in obedience to slay his son. At the last moment, God called off the test. That very act of faithfulness in uncertainty transformed Abraham’s faith into righteousness. It cemented his place as the father not only of a nation but of the faithful.

The point is what we're experiencing is not new in human life; and we’re in good company.A fragile circumstance is an opportunity to yield to the One who is good, has good plans for us, and has a greater perspective than we can see. We don’t know what will happen with Susan, but we know we can trust God along our journey.