Next steps

The weeks following Susan’s recent hospitalization have brought gradual improvement, healing and strength.  Shingles has been painful for her, more painful and longer lasting than I thought they’d be.  Her sores have remained quite tender and were accompanied by severe headache for 10-14 days.  She seems to have had some benefit from taking Neurontin, a good remedy for the nerve pain that comes with shingles.  She also had relief from an ointment called The Shingles Solution that a friend recommended. 
As Susan has improved, she’s been having tests and consultations with UCLA urologists to resolve her urinary tract infections.  Last week's CT scan of her abdomen revealed at least one kidney stone in addition to the large one diagnosed earlier.  Dr Schulam may want to test the kidney for infection since it may be feeding bacteria to the rest of her plumbing. We’ll know more this week; but I suspect a treatment of some kind may happen soon. 

Meanwhile, an exam of Susan’s bladder by Dr Kim thankfully revealed no tumors or other disease.  A separate urodynamic study indicates the incontinence she’s struggled with is probably the result of her brain tumor. Dr Kim recommended a novel solution – a bladder pacemaker that localizes bladder control with a device wired to her sacrum or lower spine.  Although the surgery to implant it carries the risk of infection, the result should remove another cause of infection and improve quality of life.  She’ll have the outpatient procedure early next month.
As far as her diabetes is concerned, Susan’s way-high glucose levels we discovered a month ago have improved as infection abated and we de-carbed our diet. She’s also begun to taper her steroids again, a months-long process we’ve attempted so many times.  I’m hopeful that given her circumstances, she can be cleared of diabetes eventually and the drug (metformin) that comes with it.  We’ll keep the healthier diet though. 

A challenge to any healthy eating plan, we enjoyed Susan's birthday jubilee last weekend with a just-the-two-of-us dinner at Walt's Wharf in Seal Beach, thanks to Susan's parents.  There was a lobster tail with her name on it. Then on Sunday, we had a wonderful family dinner at Outback Steakhouse thanks to our loving friends Mitch and Joyce.  There was a rib-eye with my name on it and a dessert for all to share. We're so grateful to celebrate Susan's birthday for the third time since our brain tumor journey began and trust God for as many future ones as he gives us.

I recall a few episodes that came about during Susan’s hospital stay. We were in the midst of Susan’s longest ER visit yet at 36 hours.  Susan was quarantined in one of UCLA’s negative air pressure rooms while they ran tests to find out what was wrong with her. Did I mention they ran tests?  It’s a process of elimination, a scientific exercise to rule out this idea or that until they zero in on what’s wrong. Each test takes time and each result takes time. With doctors from the ER, internal medicine, neurosurgery, and infectious disease involved, there were a lot of Dexters in the laboratory. At one point about 18-20 hours into it, one doctor came in, asked some questions, and promised to return with more information after he consulted with the team. After he closed the curtain and the sliding door, Susan deadpanned, “Okay, see you in two weeks.”
 

One night after she’d been moved upstairs and Susan had her carb-controlled dinner, I went down to the cafeteria and succumbed to the frozen yogurt machine.  The vanilla splorted out with force and quickly filled the cup. I pressed on some M&Ms and topped it with a clear dome lid.  I asked the cashier as she pointed to the scale, “So this stuff is sold by the ton?” “Yes, and you got it full!” she replied. “Yep,” I said. “It came out fast. I didn’t fight it.”  When I shared the contraband with my delighted but now-diabetic wife, we giggled and whispered that we were getting away with something. “This is our way of sticking it to the man,” I said. “Because what the man doesn’t know – won’t hurt you.”  Susan said, “Hey, I’m sick anyway, so what’s the difference?”
 

One last item. Either I enjoy messing with cashiers or I’m a repressed drive-by comedian. Actually, it's both.The night Susan was discharged, returned to the cafeteria for a cup of coffee, filled the Starbucks cup, capped it with a sipper and sleeved it. Evidently, the cashier didn’t know if it held coffee, tea, or hot chocolate and needed to ring it up properly. “Coffee?” she asked. Unable to resist, I raised my cup.  “No thanks, I’ve got some already.”  At least she didn’t throw anything at me.

Resting at home

We finished a long day Friday in the hospital time warp, finally having Thursday morning’s MRI on Friday at 4pm, getting discharge instructions at 6:30, and actually leaving UCLA at 9:30.  Susan is resting at home now, receiving IV antibiotics and oral antivirals for the next several days.  She’s still tired and headachy as she recovers.  This episode will be summed up under the immune-compromised department, with dual infections of the nerve roots with shingles, and the urinary tract with e. coli or proteus or whatever the little bugger was.  Friday’s MRI was clear of any new threats for bleeding or aneurism, so we assume the blood in Susan’s spinal fluid was from having to poke her several times and manipulate the needle to get fluid moving.  We remain thankful our meningitis concerns were a false alarm that led us to discover and treat the real issues.
Our next steps will be follow-up visits with various doctors to treat infection, kidney stones, diabetes, and the brain tumor.  I think that about covers it.
 

While in the ER this week, a doctor from the internal medicine team wanted to clarify Susan’s “code status” after reviewing the advanced healthcare directive we have on file.  Thanks to Attorney Mark Doyle, Susan and I completed our will and trust documents in 2003. They include a power of attorney so each of us can act on the other’s behalf, and advanced directives that outline what life-saving measures we’d like performed if we’re seriously ill. Our chat with the doctor brought the idea from the legal to the practical. 
While the document dictates Susan’s desire that no extraordinary measures be taken to prolong her life if there’s no hope of recovery, the doctor needed to know what they should do if she “coded.”  Should they perform CPR? Should they intubate for breathing? Defibrillate her heart? Well, yes, of course, they should try to save her life.  These actions, the doctor pointed out, could leave Susan alive but unresponsive and lead to another decision families don’t like to make – when to “pull the plug.”  Wait – that’s different.  What we really want is to be revived if everything’s going to be okay afterward, but not if it won’t.  That’s the document we want to sign.
So with a brief incursion into the world of bedside decisions and medical ethics, Susan and I clarified it for the doctor – we want try to save her life. Her status is “full code.”  This is just another instance of our lame attempts to control the uncontrollable, leading us to recognize our lives are in God’s hands.  I returned to the document where all this stuff was already worked out and once again found the real peace of mind we seek, “All the days ordained for me were written in your book before one of them came to be…Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139: 16, 23-24.

Shingles

Susan has been diagnosed with shingles, a nerve-root infection caused by Herpes Zoster, the virus that also causes chicken pox. The biggest problem is the painful sores she's got right now, but they should clear in a few days. There's some risk of a neuralgia that could occur later - nerve damage under the skin at the infection site that causes chronic pain in about 20% of patients.

It's a blessing we were able to get her treated with anti-viral meds within 72 hours of the rash appearing since it may have moderated her symptoms. Her symptoms were classic - painful, non-itchy rash on just one side of the body, headache and malaise, with no fever. The rash is contagious for the virus; but those infected would get chicken pox unless they had them already. Shingles can occur later since the virus lies dormant and may spring to life when some has a weakened immune system like Susan. We're thankful to finally name and treat her condition, ending our current mystery.

She'll have an MRI/MRA scan today since her medical team is concerned about blood found in her spinal fluid that could indicate an aneurism. This scan will also be an early view of her tumor instead of the MRI she would have had in two weeks, so I'm sure we'll have a chat and tumor update in the next few days.

We'll meet with her medical team in a few minutes to confirm the outlook, next steps, and find out when she can come home.

Viral infection?

You know you’ve been in ER a long time when you get acquainted with your 3rd shift of doctors and nurses.  After over 30 hours in an ER isolation room, Susan finally was admitted upstairs under the care of the internal medicine team, also in isolation until they understand the nature of her illness.  While we’re thankful she apparently does not have another case of fungal meningitis, they’re treating her for a viral infection until they can rule it out. 
This hospital episode has been more puzzling than others, since usually we’re able to diagnose a problem (hydrocephalus, infection, hemorrhage) pretty quickly and begin treating it.  This one’s a mystery and has some new elements.  While she had some symptoms of meningitis like head and neck pain, she lacked a fever and severe neck stiffness.  We’re still waiting for the fungal cultures of her spinal fluid; but the low white blood cell count indicates no infection there.  She does have a solid urinary tract infection; but that alone should not cause persistent headache. 
Susan complained of a sore scalp on the back of her head and neck beginning on Saturday – painful, not itchy.  I noticed the skin there had become red on Sunday and had developed rashy sores on Monday.  The rash is now the focus of the mystery and is assumed to be an effect of a herpes simplex virus until a culture taken last night can be completed.  Meanwhile, she’s feeling okay and is getting pain meds when she needs them.  People rightfully get concerned when there’s an ER/hospital event; but this one’s not critical or getting wonky. I expect we’ll understand the problem soon and will be able to finish treatment and get her home in a few days. As always, we know Susan’s big issue with GBM and her many complications are in God’s hands as we ask him for healing and pursue medical treatment.  Also, we’re thankful to each of you who support us with prayer and expressions of care.

Still in ER, still testing

We had a long night in ER and are waiting to transfer to a bed upstairs and for test results to confirm a diagnosis. Susan is stable - she has pain and fatigue, but times of alertness and good spirits after resting. She became dehydrated and is receiving fluids.

She's had a CT scan (looks okay), blood and urine tests, and endured a marathon 1 1/2 hour spinal tap at midnight that would earn the respect of a maple syrup farmer. And she thought I was a drip.

Early spinal fluid results seem to rule out bacterial infection; but fungal results take longer. Urine was positive for a significant infection they're treating with IV antibiotics. If meningitis is ruled out, Susan could be dealing with a combination of the UTI and diabetic issues. That's it for now. We're confident in the Lord she'll improve with the right treatment and are grateful for everyone's support and prayer.

Meningitis again?

We're admitting Susan to ER at UCLA with persistent headache, stiff neck, confusion, and some sensitivity to light. No fever. As many as 4 Vicodin in six hours didn't relieve her pain. Her neuro-oncologist suggested we go to ER to check for meningitis, given her history. 

Susan now has a lovely new bracelet. We know the drill and expect to wait a while for tests. We're glad Susan has her port for easy IV access, and we have our Lord who's with us in all things.

Steroid-induced diabetes

After three years on Decadron, the steroid commonly used to prevent brain swelling, Susan has been diagnosed with diabetes.  I think this completes her collection of Decadron side effects, following weight gain, moon face, muscle loss, swelling of extremities, and bone disease.  As much as she’s needed it to prevent too much pressure in her brain, she’s needed to be rid of it for obvious reasons. 
 

We’ve tried to taper her from it completely at least half a dozen times only to have a complication occur that requires a full dose again.  She was completely Decadron-free for only about two weeks a couple of years ago before she had some tumor progression and needed 4mg daily again.  She’s had as much as 16mg daily during major events like a hemorrhage, but has spent most of the time in the touchy sub-2mg zone.  Quitting cold-turkey could be deadly since the body’s own steroid production ceases when the manufactured stuff arrives.  A slow taper allows natural chemicals to reappear, but requires weeks at a time at each level.  Susan was down to 0.5mg every other day when the stress of her kidney stone erased several months of progress and bumped her back to 2mg daily.
 

A routine blood test on 6/23 to check her platelet counts revealed her glucose was soaring at 405 mg/dl, about four to five times the normal level of 70-110.  The next day a nurse practitioner at UCLA suggested Susan see a doctor immediately out of concern for ketoacidosis, which can occur above a glucose level of 240 when the body’s inability to absorb sugars leads to the release of ketones that become poisonous.  We went to urgent care for more blood tests – Susan’s glucose had jumped to 435.  I learned the symptoms I’d begun observing unawares were classic ones:  dehydration, cotton mouth, frequent urination, and fatigue.  She’d had to stop five times to catch her breath as we walked to the lab parking lot the day before.  Thankfully, she responded to an insulin injection at urgent care and did not need to be hospitalized. 
 

Catching this new problem on a previously scheduled blood test was divine intervention, since we were preparing for Susan to travel up north for a week with her parents and our family.  The thought of her getting mysteriously and progressively ill while removed from her doctors and me by an eight-hour drive is not a pretty one.  Thanks to God, we caught it early.  We followed up with her primary care physician on Monday after she began an oral med called Metformin, took home a blood sugar monitor, and met yesterday with a nurse and diabetes educator.  We’re told this steroid-induced Type II diabetes may be reversible with lower doses of Decadron (again!), specialized diet, and weight loss.  We’ll do our best.