Feeling better again

And she told me she was blue-blooded.

We’re midstream toward getting some answers about whether Susan is steroid dependent and if so, which drug and how much is best for her. We met on Friday with another top-drawer specialist at UCLA, endocrinologist Sheila Ahmadi. Her first step with Susan was to get up to speed on her history and order some specific tests to complete the picture. With that, we added the endocrinology stuff to an already scheduled set of fasting blood work this week. I think it was the most complex lab order Susan's had yet – at least ten vials for over 25 separate tests. We’re so thankful for her port catheter so she doesn’t need to be stuck in search of a vein – usually in vain. (That was appalling. I’m nearly sorry.) We’ll go back to UCLA next week for a bone density scan, follow up with her GP, attend the UCLA brain tumor conference next weekend, and then do another round of neuro-oncology and endocrinology visits. Remind me not to lose my Daytimer.

Meanwhile, Susan's gotten stronger again over the past couple of weeks and has been free from vomiting. It seems returning to her original steroid, Decadron, has normalized her system. In spite of chronic complications we thank God Susan's had no tumor progression for nearly 18 months, especially since two of our brain tumor friends are now on hospice, Robert Wearn and Hank Zavaleta. We pray for them and their families daily. Truly, the Lord is wrapping us in his care – and we continually praise him for the gift of life, his peace that keeps us, and the hope that sustains us.

Mysterious symptoms

We’ve been trying to figure out the source of some mysterious symptoms that have dogged Susan for the past ten days or so. Her most persistent troubles are swollen and painful lower legs with pinkish skin that’s warm to the touch, along with the increased confusion that’s been a faithful sign something’s wrong. Her legs and feet were sore enough ten days ago to make walking painful. She also had some nausea and vomiting, rapid heart rate and slightly higher blood pressure, and no fever.
 

We saw her doctor last Monday, who ordered labs, a chest x-ray, prescribed antibiotics for suspected infection, and scheduled a follow-up for today. The x-ray ruled out pneumonia; blood work revealed a slightly low red count (anemia); and labs came back on Friday to reveal another urinary tract infection.
 

If she had an infection other than a mild UTI, we’d expect a fever. If she had kidney failure, we’d see it in her blood work. If she had congestive heart failure, we ought to see shortness of breath made worse when lying down (she’ll have an EKG next week to rule it out). Swollen legs and feet can accompany the steroid taper we’ve been trying, but her lower dose was too small a difference to cause such a withdrawal reaction. We haven’t ruled out blood clots; but she’s been too mobile for this to be likely.
 

Thankfully Susan’s nausea, heart rate and BP have normalized; and she’s feeling better in general – but leg swelling and confusion remain symptoms without a theme. We saw her GP again today, had a scheduled follow-up with one of her urologists at UCLA, and did another set of labs. With the new lab work, we’ll see her infectious disease specialist at UCLA on Wednesday and hope to know more about what’s going on. Meanwhile, we’re glad she’s improved and not worsened, and are always thankful to God for his love, grace, and presence with us.

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.

Clearing infection, stable scan

Susan’s lab tests early last week were positive for a urinary tract infection, explaining her recent slump.  We coordinated with her infectious disease physician, who meets the highest standards of care we've come to expect at UCLA, but is someone we’ve come to know too well over the years.   He prescribed an antibiotic that seems to be working well, given Susan’s gradually improving symptoms.  We’re relieved to learn there wasn’t something more serious afoot since a UTI is relatively easy to knock down. 

Wednesday found us back at UCLA for Susan’s scheduled MRI scan.  Gratefully, her tumor is unchanged once again, so the CCNU evidently has been working.  We had an unhurried visit with her oncologist, Dr Nghiemphu, discussing plans for her steroid taper, the possibility of having chemo next week, and her treatment schedule once we’re done with CCNU.  Susan’s recent series of blood tests show her platelets are low and trending lower, so she went for more labs on Friday.  If her counts improved, she may have her last dose of CCNU next week; otherwise, she'll be done after five doses. 

Susan spent an extra hour in the MRI scanner on Wednesday for a research study using MRS, or magnetic resonance spectroscopy.  This is a term that can make you feel really smart for a moment while you say it.  The sample of her brain tumor tissue taken in 2007 shows she has a genetic mutation that occurs early in the formation of brain tumors and seems to indicate a positive response to therapy and positive prognosis.  Susan’s neurosurgeon and neuro-oncologist asked if she would participate in their study since they’re searching for a non-surgical way to detect this genetic alteration in others during the early stages of brain cancer treatment.  They know she has it, so they’re experimenting with MRS hoping they can see it.  This extra scan not only was useful in their research it was a useful complement to Susan’s PET scan last year that will help the neuroscience team know more about her tumor.
 

We’re thankful as ever for good MRI results, great care on all sides, and for God’s never ending faithfulness for us.

Waiting for improved blood counts

Out of a busy couple of weeks at my office and an uneventful span at home, here's a brief update.  Susan has continued to do well in general – but the platelet count in her blood has trended lower again in recent blood tests.  Her platelets at week four were at 58k, while last week at week five dipped to 42k.  The normal level needed to resume chemo is 150k; and the danger-low level that can lead to spontaneous brain hemorrhage is about 10k or less.  She rebounded on her own prior to her January chemo; and will have another blood test tomorrow in advance of her Wednesday oncology visit.  If her blood counts look good, we’ll proceed with chemo on Thursday.  Otherwise, she may need a transfusion.  We’ll see.  I’m also eager to see her MRI this week and hope for more tumor stability or, Lord willing, shrinkage.  

We’ve had several highlight moments in the past several weeks, including the morning of Valentine’s Day when I gave Susan her card and read it to her.  When I choose a greeting card, I usually know at a glance whether it’s the right style. I don’t need to read every word to know that it fits and doesn’t have a lot of syrup.  This card was no different and went into the cart along with the week’s groceries.  But when I read it to her, I was struck by the meaning of its simple message – that I love how good we are together, partners and friends who are there for each other no matter what. As my mouth formed the words, I was surprised how it so sincerely captured a truth about our relationship – that what I love about us is that I get to be “us” with her. 
Susan reacted immediately, saying she had a tingle-feeling when I was reading.  We both shared our love for each other as we embraced with tears.  I love that after losing so much in Susan’s abilities and in our lives, we continue to gain in affection for each other.  I love that after 25 years, our marriage is mature and full; and that one partner’s inability to buy a gift or plan a surprise doesn’t leave the other one feeling needy or resentful.  We had a beautiful day together and with family.  The best thing? I asked Susan, “Willst thou be my Valentine?”  She said “Yes, I willst."
 
One recent low point came as I finished helping Susan in the bathroom and she slumped over in weary frustration.  She cried as she thought of her condition and said she’s tired of it all. Thankfully, Susan doesn’t often feel defeated this way.  I tried my best to comfort her.  I can’t fix it.  I can’t change it or make it go away.  But I held her close and assured her I’m with her.  We’re together.
 
In contrast, at one recent bedtime Susan said God is getting everything ready; and everything’s going to be so much better than it was before, whether it’s while she’s here or when she’s in Heaven.  Her confidence and peace come from a place deep in her spirit that is unshakable, part of her foundation of faith the Lord established in past generations and strengthened in her lifetime.  The quality of the outcome is assured even while the nature of it remains veiled in mystery.

Some chemo effect and tumor activity

In spite of her generally stable condition, Susan's latest round of tests revealed a few areas of concern along with some recently increased headaches. The first of three blood tests beginning the fourth week after last chemo showed her platelet count dropped to 15% of normal, nearly low enough to require a transfusion. Since platelets are a clotting component, the risk for Susan would be another hemorrhage or spontaneous bleeding in her brain. With these results arriving when her week 5 test was due, I took her to UCLA on Dec 30 instead of a local lab so we'd be in place in case she needed a transfusion. Fortunately, her platelet count had reversed trend and doubled, although it still was too low to resume chemo at that level.

We returned to UCLA this Wednesday for her week 6 labs, MRI, and oncology visit. While the good news was that her platelets that had rocketed back to 100% of normal, her white cell count took a hit from the prior week. White blood cells are immunity soldiers that combat infection, so chemo remains on hold this week. These blood-count hits are the result of three doses of CCNU chemotherapy since September, although the effects actually occurred a bit later than expected. (My Susan is a strong woman.) She'll have another blood test next week to see if her counts have recovered enough to resume chemo. We have the pills at the ready.

Her MRI showed greater contrast compared to her two most recent scans, a sign that tumor activity has increased a bit – but thankfully not a lot. Dr Lea believes continuing CCNU will be effective for now and has other treatments in reserve when needed. The scan also showed increased brain swelling, explaining Susan's more frequent headaches. The doctor thinks it's caused by our attempt to reduce her steroid dose since last time, so we're bumping her back up to the nominal 2mg Decadron daily and will leave the taper fight for later. We remain thankful for the excellent care at UCLA and for Susan's continued stability overall.

I corresponded this week with a former co-worker who is also a Christian and in her own battle with advanced breast cancer that has spread to other parts of her body. The way she's holding on to hope in God stirs my admiration. I noted the remarkable similarities between Susan and her. Each has had several courses of treatment for life-threatening cancer, each is presently stable but medically incurable, and each is committed to wait on the Lord in faith. I did my best sum up our state of mind and spirit since Susan's GBM diagnosis 2 ½ years ago:

"Also like you, we trust the Lord with our lives and the outcome of this journey. We've learned that in spite of our troubles God still is good; and in fact his faithfulness is what sustains us. We've discovered the preciousness of suffering that allows us to appreciate the gift of life each day. What power do we have anyway but what God gives us? On one hand, we know what he is capable of doing. Healing from cancer is not a problem for God the Almighty. Yet we also live in a fallen world with the mystery of his will and accept the best plans of God the Sovereign. So, we pray and ask for healing, pursue every medical option, and take each step as it comes. We trust God completely, are hoping for the best, and are ready for anything. Ultimately, heaven will be a much better life for all of us!" This world is not our home.