Looks like more tumor

With the results of Susan's Dopa-PET scan on Friday, it appears she's experiencing tumor growth and will need to restart chemotherapy in the near future. Dr Nghiemphu wants to match the PET scan with Susan's last MRI for a better review; but she believes the scan confirms a new area of tumor near the midline and ventricles. She'd like to see the results of next week's scheduled MRI before we decide on a treatment, most likely another type of chemotherapy. In March when we discussed the potential for tumor recurrence, she said there are a number of chemotherapy drugs she believes will be effective for Susan's combination of Grade III/Grade IV tumor cells. Since we've gotten beyond the first and second lines of treatment of Temodar + radiation, then Avastin + CPT-11, it seems we're venturing into an individualized mode where you find something effective and stay on it as long as it works. Thankfully, Susan is a brain tumor survivor who has taken as long as two years to reach this point.

There is relief in understanding what's wrong since Susan has slipped below her fine form of month or two ago and the burden on her system has become more evident. There's hope in anticipating the next level of treatments will do their work to help her and that God may heal her by any means. And there's comfort in knowing that God has us in the palm of his hand, just as he has all along our brain tumor journey. I find these words from 1 Peter 1:6-7 especially encouraging – Peter praises God for our living hope, for our inheritance, and for God's protection, and then writes:

In 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 your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

Our help is not in gold, or medicine, or even in our faith itself. Our help is in the name of the Lord. I can't say it any more plainly – we trust him.

PET scan

The fact that Susan has been more mentally burdened this week makes me glad we were able to get in for her Dopa-PET scan at UCLA today. It's a type of CT scanner that uses a radioactive chemical called Dopa injected in the bloodstream to highlight images of the brain. They keep the syringe encased in a heavy tungsten enclosure the size of a thermos and connect it to an IV.

Susan was so full of the stuff she could change our car radio stations by waving her hand. It prompted comments from me like, "Honey, I know you're not a Nazi, but I need to hold your arm that way so we can listen to KRLA on the way home." It's hard to explain, but I think our microwave is jealous. With Susan's new glow, I'm pretty sure we'll be able to keep the nightlights off for a while. We'll get the results on Monday and we trust God as ever.

Holding Up

Following a lingering headache, another episode of nausea and vomiting on Saturday and weekend phone calls with a neuro-oncology fellow at UCLA, Susan was put back on Decadron, the anti-brain-swelling steroid. Because of its side effects, it's one of those drugs that as badly as you need it, then you need to get off of it. After finishing a careful, three-month taper in June, resuming it was a reluctant but necessary step – and she's doing better this week. We're already stepping the dose down from 8mg to 6mg and may be at 4 by the end of next week unless she worsens. The fact that she hasn't had a big cognitive slump by now is a good sign and gives us hope of a favorable PET scan result in the coming weeks.

I've written before about our nighttime talks when we have beautiful, lucid conversations before going to sleep. I don't know if it's the dark quiet of our bedroom, the lack of distractions, or the peace of our prayer time, but when we talk sometimes the effects of Susan's illness seem to fade away. We could just as easily be having a conversation five years ago.

Last week's MRI was the first troubling one we've had in over a year, so one night in bed last week I asked Susan how she was doing and whether she was feeling a bit discouraged. She admitted she was, and a bit scared, too. I asked her about that. She said she's not afraid of dying, but she's afraid of losing all the progress she's made. She said she's going to do her best and keep trying. That's the answer of a fighter who's a long way from giving up. I told Susan how thankful I am for how God made her – a person with a positive disposition and an ingrained sense of commitment. Her hard-work ethic means she does what needs to be done in spite of how she feels. Gotta love that woman.

We also talked about Heaven and how amazing it will be to see, hear, and touch a world our souls have longed for, and we imagined what it will be like to be with the Lord in person at last. I told Susan I'd been thinking about how the nature of our faith and hope in God will change when we go to Heaven. What happens when we don't need to believe any more because we're looking right at Him? What happens to such a hope when it's fulfilled? We wondered about that. Even the word "fulfilled" seems lacking – I have a sense that what we'll get in place of our hope will be much, much more. Someday….

Concerns

We went to UCLA on Wednesday for Susan's scheduled MRI and oncology update. The timing was good, because on Sunday morning she vomited at the breakfast table and developed a persistent headache – two signs that tell us something could be wrong. While there's no obvious tumor growth in her left frontal lobe where the tumor was removed, the MRI showed an area of swelling nearby. The blood clot from January's hemorrhage is slightly smaller than six weeks ago, but what's there may be obscuring the view.

Dr Nghiemphu is also concerned about an area to the right of Susan's tumor cavity near the midline and ventricles that may be new tumor growth. The area didn't pick up the contrast solution that would highlight a fast-growing tumor; but she's concerned about a lower-grade cancer since Susan's biopsy had both types of cells. She ordered a dopa-PET scan for the first available slot, but that's not until mid-August. Since Susan's headache eased by mid-week and she's generally doing well otherwise, we're not too alarmed. We hope she continues to do well so she can avoid going back on the steroids that would be required if she declines. As always, we're ever in the Lord's hands and trusting him.

Here's an encouraging passage from Psalm 28:

⁶ Praise be to the LORD,
for he has heard my cry for mercy.

⁷ The LORD is my strength and my shield;
my heart trusts in him, and I am helped.

Waiting

Susan graduated this week from having a full-time, paid caregiver to having the help of family and friends, a step made possible by her growing strength plus the kindness of others. We're grateful to Ana for her seven months of wonderful care for Susan and will need to overcome her spoiling us with daily laundry service and other housekeeping helps. But what's astonishing is that we can turn to more than a dozen dear ladies who each devote 3½ hours to provide Susan with care and companionship each weekday. We are rich in acts of service on our behalf and are in awe of the love expressed through our church.

While a friend and I were talking this week about the two years since Susan's brain tumor diagnosis, I mentioned her ten or more stable MRIs since 2008 and realized a new perspective – we're waiting for something to happen. We're waiting for the tumor to grow again, because that's what high-grade, malignant tumors do. We're waiting for God to heal her miraculously, because that's what a loving, almighty God does. We're waiting for a medical breakthrough that will move glioblastoma from treatment to a cure, because that's what scientists are dedicated to discover. These are our three options, so we're waiting. Sometimes it's hard to wait.

Sometimes it's harder to wait than others, like when the momentum of a devastating disease like brain cancer can't be stopped in spite of all efforts. As the crisis intensifies, the patient worsens – and then it's over. The battle is finished. I'm thinking of brain tumor buddies we loved: Larry Litherland, Joanne DeBoer, Jeff Nord, and Joanne Bono. Sometimes, momentum closes in on the unbelievable, which becomes the inevitable. That kind of waiting brings anguish. It can crush you because you just can't get a break; nothing works. We've had a break, thank God, so we're still waiting.

None of us likes waiting for anything anyway. Who hasn't yelled "Hurry!" at the microwave? Jell-O takes overnight in the refrigerator to set – but we speed it up by adding ice cubes. Then there's minute rice and minute oatmeal, and we haven't even left the kitchen. Don't get me started about the DMV.

Waiting for anything you're focused on can be torturous, like a child waiting for Christmas, or a trip to Disneyland. It can be especially hard to wait for things you can neither control nor avoid, like the 95-year-old who's outlived her husband and friends and restlessly faces her natural end of life. Such an existence can be made worse when it could have been avoided, like the prisoner whose agony over his long sentence is magnified by the frustration of causing it. But it's especially hard to wait when something as important as the life of a loved one hangs in the balance. It's natural to wonder what will happen, and when. Would it be any easier if we knew what the outcome would be? I don't think so. We'd still have to wait. So, we're waiting.

Then there's God, always attending, always caring, always providing his creative power on our behalf, always making despair optional for us even if our circumstances are not. Those who know they belong to the one who does his best work in graveyards have a wellspring of strength that somehow finds its flow in hopeless situations. Waiting need not be misery when it can be infused with faith, discovery, and the expectation of God's goodness to be revealed. We have his promises to guide us, like a favorite of mine from Isaiah 40:

28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

With help like that, I don't mind waiting.