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.

Emergency brain surgery

Wed 07/04/07 am
I arrived at about 12:30am to find her intubated on a ventilator and being moved for a CT scan on the way to the intensive care unit.
Sue's brother Randy came to ICU, and we waited as her vital signs and respirations stabilized, enabling her to have the breathing tube removed, a good thing. She really fought that tube.
She had more limited responsiveness over the following hours – eyes closed, no speech. We were thankful for a grasped hand and wiggled toes on demand. I slept in the ICU lobby for a couple of hours until 6am.
Susan had diminishing responsiveness throughout the day in spite of large doses of meds to reduce brain swelling. Her lethargy increased as she seemed to decline neurologically. Dr Ramin Javahery was the neurosurgeon on call who escalated her surgery from 7/10 to 7/5 pm, then to 7/5 am.

Wed 07/04/07 pm
I went home about 4:30pm to sleep while Sue's aunt Linda stayed by her bed. After an hour's sleep while ignoring the phone, I awoke to the doorbell and loud knocking. Our neighbors told me Sue would be going to surgery immediately and the doctors were waiting for me.
Susan was back on a ventilator when I arrived and was barely conscious. Aunt Linda, our kids, and niece Alyssa were there. I was troubled by Sue's appearance – she was out of it. I prayed for her and the surgeons then joined the family to wait.
Over the course of surgery, about 25 people joined us, waiting in the lobby and gathering to pray and worship in the hospital chapel, not to mention all who prayed wherever they were. That's the Body of Christ for you.
After only an hour and a half, the surgeons emerged with news that they appeared to have removed the majority of tumor while avoiding brain tissue; and Susan was in critical but stable condition. We all rejoiced.
I went back to sit with her in ICU until I went home about 11pm.

Slipping into crisis

Mon 07/02/07
Susan had variable pain over the past few days. Saturday was tough; but she improved Sunday and Monday. We went to church and were surrounded by love and prayer on Sunday.

Tue 07/03/07
Preliminary lab results on Susan's biopsy indicate a stage 2 (early) astrocytoma, a term for a common type of brain tumor or glioma.
The worst day yet – pain in the morning, a 2 hour nap after breakfast, and pain with vomiting 2x by early afternoon. I called the doctor, who recommended we go to ER right away.
As I was helping Susan get out of the car near at the loading zone, I saw her eyes roll back as she slumped in my arms – she was dead weight, totally unresponsive. I thought she was dying, got scared, and kept telling her to hang on, not to leave me. I managed to call for a wheelchair and got her inside. She was barely awake, groggy and lethargic. She had extremely limited speech and was not able to hold my gaze for more than a few seconds. She could respond to verbal cues by squeezing a hand, lifting a leg, extending a foot, etc. Lots of writhing in pain. She was admitted to the neurological ward at about 10pm (same room, same bed as last week!).
I stayed with her as the nurses settled her into the unit for close observation and went home.
I arrived home at 12am and received a call from the hospital – Susan had a seizure and was unresponsive and placed on a ventilator. I rushed back.

Awful news

Tue 06/26/07
Susan had a sleepless night of severe pain, and woke Lexie several times with groaning and writhing. I had tried on Monday to get an appointment over their two-week stay with one of the two gynecologists and one neurologist in Lakeport, but to no avail. Sue's dad David took her to Sutter-Lakeside Hospital ER that morning. Dr Singh ordered a CT scan after several hours of pain medication and testing, and discovered a brain mass, about 7cm x 10cm (3x4 inches) in size. He sent her away with a medication to relieve brain swelling. I got the shocking call from David and arranged for Susan to fly home the next day with her mother Helen and Lexie. I kept a scheduled meeting at church with Mitch VanderWal and Chris Olson where we scrapped the agenda and prayed like crazy. I cried a lot. It was good to be with friends.

Wed 06/27/07
Susan arrived at Long Beach Airport. After lunch at home, we went to Long Beach Memorial Medical Center ER. They administered more meds for swelling, seizure, and pain, and did an MRI. Sue was admitted the neurological ward upstairs and scheduled for a brain biopsy.

Thu 06/28/07
Dr Barry Ceverha performed a CT-guided brain biopsy to sample the tumor.

Fri 06/29/07
Susan was discharged from the hospital with medications to await biopsy results and a proposed craniotomy surgery for tumor resection on 7/9 or 7/10.

Having severe pain, exploring the cause

Apr-Nov 2006
Susan was diagnosed and treated for early stage breast cancer, and had a bilateral mastectomy with reconstruction. Thankfully, she did not need radiation or chemotherapy since they caught it so early with a routine mammogram. Her oncologist released her believing she would not have any recurrence of breast cancer.

May-Jun 2007
Susan had a visual event called an aura that looked like sparkling or shimmering lights in the peripheral vision while everything looked kind of wavy in front. She began waking up with a headache each morning with severe pain at the crown of her head. Pain relievers like naproxin gave some relief, but the pain was always there. She consulted and visited a variety of doctors – optometrist, chiropractor, general practitioner, plastic surgeon (breast reconstruction follow-up). Blood tests that would have detected metastatic (spreading) breast cancer were negative.
I was focused on the likelihood of a hormonal or pre-menopausal connection and was having her pursue an ob-gyn visit.

Fri 06/22/07
Susan went on vacation to Clearlake in Northern California with her parents and our daughter, Lexie. The boys and I were to follow for a few days the next week since they were in summer school. Susan woke up in severe pain that morning and had been nauseous and vomiting. It was a slow start following a sluggish and disorganized night of packing. I was amazed at how many items she forgot to pack – I shipped a box up north for her on Monday.