Another hospitalization

Fri 08/24/07
Susan was in extreme pain and crying once again at midnight, a couple of hours after going to bed. I gave her valium instead of the usual vicodin to try easing her pain. Still hurting at 2am, I gave her more vicodin and noticed she felt feverish as I held her. Her temp was 102F, a sign of trouble combined with inconsolable pain. A nurse I called at UCLA said I should get her to an ER right away. I called for an ambulance when I couldn't get Susan to walk to the car – she was transported to LB Memorial.

Sat 08/25/07
The staff at LB Memorial ER gave Susan morphine for pain and conducted a series of tests, including a blood culture and a lumbar puncture (spinal tap). Even with morphine, she still had moderate pain. Her cerebrospinal fluid had a white blood cell count of 1970 – normal is 0 to 5. She was diagnosed with meningitis, given IV antibiotics, and transported by ambulance to UCLA, arriving around 3pm.
Susan was placed in an isolation room at UCLA Med Center ER as a precaution against infectious bacterial meningitis, followed by more antibiotics, blood tests and pain meds. A neurosurgeon lifted the isolation order around 7pm and admitted Susan to the 7th floor neuro unit about 9pm, then did another lumbar puncture at 11pm to test her fluid.

Sun 08/26/07
Breakfast was Susan's first meal since dinner on Friday, a welcome event. She continued on antibiotics and pain meds, and another blood culture. My sister Becky spent the afternoon visiting and had dinner in Westwood with the boys and me.
We had a unusual moment when Susan's surgeon, Linda Liau, was featured on a channel 2 news segment about the experimental vaccine we're hoping will be available to Susan. The timing was just surreal – Susan was at the hospital under treatment by the doctor who is on TV discussing the treatment she may receive. 
You can watch the video at http://cbs2.com/video/?id=46462@kcbs.dayport.com&cid=71.

Mon 08/27/07
Susan had another night punctuated by pain, getting relief with vicodin and dilotid. Her blood cultures need to continue growing over 72 hours to rule out bacterial meningitis. Meningitis is inflammation of the membrane surrounding the central nervous system, and its bacterial form is serious and can be deadly. The aseptic or non-bacterial form is a mostly harmless, sometimes follows brain surgery, and usually corrects itself in 5-14 days.
She underwent an angiogram in the afternoon under general anesthesia to investigate a dissection or tear in the artery that feeds the base of the brain, a condition that may have contributed to her previous stroke and poses a risk for future strokes. We are awaiting results and the medical team's discussion of possible treatments.
Susan also had a PICC line (peripherally inserted central catheter) placed for prolonged IV access. Her right arm is unavailable for needle sticks due to risk of infection since she had a lymph node removed last year. Her left arm has been punctured so often for two months that scar tissue makes IVs a challenge. The catheter prevents the vein from collapsing, can remain up to 30 days and allows injections and blood draws without new punctures. Everyone is happy about the PICC line.
Dinner was her only meal of the day and preceded a solid night's sleep, such as it is with 2-hour check-ups for vital signs. She was still in considerable pain and received more dilotid and vicodin. Radiation and chemotherapy are on hold for now until next week.

I keep revisiting the text of Psalm 3 (above) in the words of a song our choir has sung: "Many are they increased that trouble me, many are they that rise up against me. Many are they that say of my soul, 'There is no help for him in God' – but thou O Lord are a shield for me, my glory and the lifter of my head..." The many complications of Susan's condition are starting to feel like being caught in a tornado preceding an earthquake followed by a hurricane. What's next? Hot lava? But God continues to lift our heads. Thank you, Lord.

Tue 08/28/07
Susan has been diagnosed with fungal meningitis, an uncommon form that usually occurs in people with compromised immune systems. In her case, the infection is caused by a yeast called candida albicans that is airborne, is prevalent everywhere, and likely was introduced during one of her invasive procedures or surgeries. She experienced most of its symptoms (clouded by her ongoing condition): headache, confusion, tiredness, stiff neck, irritability, and fever. I'm glad we got her hospitalized and diagnosed since its complications can be serious and deadly. She'll be treated with an antifungal IV; treatment can take 2-4 weeks as fungi are harder to get rid of than bacteria. Her hospitalization is open ended at this time.
She had another lumbar puncture this evening to analyze cerebrospinal fluid for one more baseline comparison prior to antifungal treatment.
We had some good news today – yesterday's angiogram came back negative – evidently there is no tear in the artery that feeds the brain stem. I still need to find out why they thought there was one initially; but I'm glad to have the issue resolved. Thanks to God.

Wed 08/29/07
Today was a good day as Susan experienced a dramatic lifting of meningitis symptoms while receiving anti-fungal medication. She was stronger, more alert, more energetic and in good spirits; and was able to have a bath, walk around a bit, and pass some time sitting in a chair. I enjoyed her sassy attitude. When bending her left arm too sharply caused her IV alarm to sound, she straightened her arm and told the machine to be quiet. After it stopped a moment later, she said, "See, I've got this whole thing under control."

Fri 08/31/07
Susan's hospitalization has been a see-saw experience of come-and-go pain amid diagnosis & treatment for fungal meningitis. Apparently, her body was susceptible after being on the drug decadron since late June. She's had three spinal taps in nine days to track the infection. Conflicting results this week had doctors waffling on bacterial vs fungal diagnoses while administering a shotgun of various IVs with antifungal and antibiotic medications. Her condition improved as they've narrowed the treatment to the two antifungals effective for candida albicans. The result, thankfully, has been less pain and confusion with better general orientation and mood.
The angiogram results to investigate the artery leading to her brain was negative for a dissection or tear. The spot they saw on an earlier MRA was more of a fold in the vessel. The angiogram also shows that the left fork of the artery that feeds the brain is congenitally narrow, a factor that could have led to her stroke.
We learned Susan is not eligible for the cancer vaccine clinical trial since she had breast cancer last year. Dr Liau said the trial is in pivotal phase 2, meaning there's a possibility for FDA approval prior to phase 3. Once approved, Susan can have the vaccine – that's our next hope.
During a particularly trying week attended by pain and uncertainty, the Lord has brought us to a place of providing what we need for each day. Tomorrow is out of reach and remains free of presumption. Somehow for today, we're ok.

I have enjoyed my summertime walks around the now-quiet UCLA campus, retracing my steps as a student over 20 years ago. I follow myself as a young adult among crowded lecture halls, busy pathways, and quiet study sanctuaries, tracking the images as they echo around the buildings in front of me. I was 21 when Susan and I married after second quarter finals in March of 1985. I was disconnected from student life as a married student who commuted to campus – but I was satisfied. Susan was my girl; church my fraternity; and UCLA my university. With no money in the bank, we were rich in hope.
Walking south, away from college memories and toward the medical center building, I was jarred back to the reality that my bride is lying in there with the remnants of a malignant brain tumor. Past and present collided violently in my mind as I walked. But my steps led me back to the wife I love – and we're together for another day.

Sat 09/01/07
I brought Susan a smoothie and sat with her as we watched college football on TV in her room. Being fans of the sport, we enjoyed watching the games and the sense of normal life that came with the afternoon.