Tumor stable again

It's been about a year since Susan's last tumor progression and the beginning of her latest chemotherapy.  The good results since then extended her MRI intervals from 6 to 8 weeks and led to last week's scan and oncology visit.  The good news continues – her tumor was stable once again.  We're so thankful. The scan shows more swelling near the tumor site; but that's to be expected since we're tapering her steroid once more and are down to about 1mg daily of Decadron.

There's been little development on Susan's kidney stones or other urology issues, so the holding pattern continues. In fact, much of our life seems to be a holding pattern. Her brain cancer has not advanced, nor has it healed. She's made a phenomenal amount of physical and cognitive improvement especially compared to 2007 and 2008, but remains encumbered and far from normal. We're still at peace with the situation and trust God with the outcome. In a moment of reflection about her progress today, Susan said, "I'm getting better – slowly, but I'm getting better. Who knows what God has planned for me? I'm going to find out."

We had a wonderful Labor Day weekend in the mountains and enjoyed perfect weather in the forest at Angelus Oaks. Susan was able to relax on our new deck, join friends at the annual potluck, and felt well enough to venture up the road to a party at the Gebb's. We're supported on all sides by loving family and friends, and we're grateful.

Feeling fine

In spite of occasional spells of tiredness or pain, Susan feels well these days.  She’s been diligent about eating properly, so her blood sugar level has measured well below 150 for most of the past few weeks.  It’s amazing to test her glucose after breakfast when she has a bowl of cereal once a week instead of her usual eggs – cereal sends the level higher and proves the benefit of low-carb eating.
 

In discussing results of the bladder pacemaker during our follow-up urology appointment, Dr Kim decided the test was successful. Even so, Susan probably won’t get the permanent device since its manufacturer has not approved it when having MRIs, a frequent event for her.  When the issue came up just before surgery, I wondered why we were doing the procedure at all and why we didn’t know about the conflict earlier.  The company rep said there’s no known problem with the device, but it had not been specifically approved for use with MRI.  The trial device posed no MRI risk and would provide good information, so we went ahead.  Since then, Susan’s specialists have been chatting about the trade-offs; but I suspect we’ll be safe and pass on the permanent device.  She’s doing okay right now in that department anyway.
 

She’ll have an infectious disease follow-up next week and her scheduled brain tumor check-up after Labor Day. We’re ever in the Lord’s hands.
 

I often say Susan is the sweetest person I know. She handles her illness bravely, repels the urge to complain or have a sour attitude, and is always concerned about the welfare of others, especially our family. Her desire to do things right and obey the rules makes her a gracious patient.  Compliant by nature and having lost a good deal of independence, she sometimes even asks if it’s okay to hold her fork in her other hand.  My Susan is just so sweet. 
 

Last night as I soaked in her adorability, I told her again that I love her. She echoed her feelings to me.  Then she said she’s become more aware of feeling surrounded by the love of others, more than she has before, and that she’s feeling loved by people who never may have expressed it before. I agreed that lots of people love her and are showing it in many of wonderful ways. We noted the paradox of an illness like GBM – that it connects you more deeply to others than when life was normal and busy and overlooked.  We agreed that if cancer creates more meaningful relationships, that’s not a bad thing.

Another good week

With more distance between her and the conditions that led to July’s hospitalization, Susan continues to improve. Some of her sores from shingles remain and still are painful, but much less so.  We had several more urology activities, including another consultation on July 30 to discuss the treatment plan for Susan’s kidney stones. While the stones may be causing her ongoing infections (with another last week), we decided to table the issue until we know whether the bladder pacemaker may fix her incontinence and another point of infection.
 

Susan had an InterStim device connected Tuesday on a one-week trial basis. She has a controller the size of a large TV remote that clips onto her waistband and connects electrodes passing under her skin to the sacral nerve on the lower spine. The idea is that when urinary urgency or frequency is caused by disrupted brain signals, sending mild electrical pulses to the pelvic floor can help a person regain control. Susan has had some improvement so far.  We’ll evaluate the results on Monday with the urologist. If they look good, we’ll schedule another surgery to implant the device.
 

I continue to be amazed at Susan’s unquenchably positive attitude and enduring faith. To her, today’s headache is not as bad as yesterday’s and will be better tomorrow. Those shingles sores were a lot worse a few weeks ago.  That back pain will only last a few more days. True, her incomplete memory means her awareness of pain that continues even over days at a time is blessedly distorted. But her ability to draw from her reservoir of hope truly is life-sustaining. 

Speaking of her incomplete memory, I enjoy Susan’s remarks lately when it’s time for dessert. Since her diabetes became known to us, she now enjoys a low-carb fudgesicle after dinner instead of something with lots of sugar. She really enjoys it. A lot. She’s thrilled she actually can have such a treat. She’s astonished it’s not forbidden. It’s indulgent. It’s dreamy. It’s so satisfying. Carried away in a silky-cold chocolate stupor, she’ll say something like, “I know I have this treat every night, but what's nice about not remembering things is that I forget how much I enjoy it, so I get all excited when you bring it to me the next night. And now it’s the next night already so I’m really happy.” “Yep,” I reply, “First time every time.”
 

When we broke Susan’s overnight fast after surgery at noon on Tuesday, we gave thanks for our food and for all the support we get from doctors, family, and friends.  Susan recalled being greeted by someone at church on Sunday who’s familiar with our situation and said she’s praying for us. Susan doesn’t know her well. She thought about all the people she doesn’t know who know about us and support us in prayer. Her thoughts turned to Heaven.  She said someday she’ll go to Heaven and she’ll see all these people she doesn’t know now but will know then, and will have an instant connection to them. As she’s said so many times before, she said we have no idea about the things God has in store for us in Heaven. It will be amazing.
 

I think of what John says – that disciple who saw and heard and touched and knew Jesus on earth, and years later writes about what is to come. 

“Dear friends, now we are children of God, and what we will be has not yet been made known. But we know that when he appears, we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure.” 1 John 3:3-4

This is the hope that’s burned into our souls. This hope holds out the possibility that God could heal and restore Susan instantly for the remainder of her years on earth.  But greater than mere possibility, this hope holds out real knowledge for us.  We know we’ll have eternity with God that’s beyond anything we could imagine.

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.