More improvement and beautiful gifts

Mon 12/18/07
Beginning with a grocery store trip on Friday with p-t Tracy, some prep work early this afternoon with o-t Kim, and some more prep work with speech therapist (s-t) Connie, Susan prepared dinner for the first time since her brain tumor diagnosis. She cut and marinated some chicken and made rice; later we heated some refries, made a salad, and had delicious chicken tacos. It was a great boost for Susan and a fine example of her therapists' teamwork. We're thankful.
Susan has had periodic abdominal pain the past few days that's become more persistent and sharp, and had a low-grade fever this evening. I'm watching her closely and may need to have her shunt evaluated. We're praying she improves so we can avoid another ER visit or hospital stay.

We read again in our Streams in the Desert book about Rom 8:28 and God working all things together for good for those who love him. The devotional reading says the very things that would otherwise drag the Christian down to defeat or cause us to give up actually bring us closer to God, and can even make us better off than we were before. Susan and I agree. We're still walking our journey, but we treasure the way God is growing and changing us, preparing us for what He has in the future. In one respect, God's methods make no sense to us – but somehow, we need the trial of tough times to unleash our potential for good character and the transformation we so desperately need.

Sat 12/22/07
Our minor alarm this week with Susan's abdominal pain and mild fever subsided as her symptoms improved. I think she was feeling some effects of greater exertion with all of her new therapies. We are grateful that we avoided another hospital saga and are on track to enjoy the church and family events of Christmas. We're all looking forward with great anticipation to our 7-day family cruise in Hawaii, leaving Sat 12/29 for a tropical New Year.

Susan received prayer and encouragement on Thu from our friend Wendi Carpenter who is here with her family to visit from Michigan. We discovered the Holy Spirit had led Wendi and I separately to pray for Susan to receive the gift of healing that is healing not just for her but a wellspring of healing for others also. Susan now has a sense that she need not wait to minister healing to others until she is healed, but that she may respond to the Lord's leading even now. As the mystery of this season of life continues to unfold, we are open to God using Susan as a witness to His grace and an agent of His power. We don't know what that will look like exactly, but we're open. We want to listen, learn, and obey.

Last night we arrived home to find a large jar of coins and bills on the porch tied with ribbon to a book called "Christmas Jars." Given anonymously, evidently the book's theme is Christmas generosity along the lines of "It's a Wonderful Life" and "Pay it Forward," encouraging us to share with one another. When I returned from this morning's shopping trip to buy groceries for the week and for Christmas dinner, I had spent an unusually high amount at the store: $232.33. By then, Susan, Austin, and Adam had sorted and counted the cash, amounting to $224.76. That means we spent under eight dollars out of pocket for the family's Christmas rib-roast dinner, with my mom, grandmother and siblings included. It's all so unbelievable. Our God is great – we give thanks for a merry Christmas.

Progress, therapy; a friend loses his battle with brain cancer

Sat 12/15/07
One thing that hasn't changed since the onset of Susan's brain tumor treatment is the busy-ness of December, hence the delay since my last update. I'm pleased to report the past two weeks have been marked by terrific progress on all fronts in Susan's condition, in strength, alertness, memory, initiation, stamina, and so on. Having the lumbar shunt implanted made a dramatic impact – I think hydrocephalus had been a factor for a while. With hopes of continued momentum against tumor growth, the future is looking brighter.
We got back on track with Rehab Without Walls and have had a series of evaluation and therapy visits this month. Her therapists are a good fit for Susan as a motivated and well-functioning patient, and are poised help her push through her barriers toward independence. Physical therapist (p-t) Tracy took Susan to shop at Trader Joe's yesterday after she compiled the grocery list. Among the items she bought were ingredients to make Tuesday's dinner with Kim, her occupational therapist (o-t). Also, Susan has taken the challenge to shed her walker in favor of a cane for greater mobility and freedom. These ladies care about seeing their patients improve and are truly impressed with Susan's advances since October. I believe Sue will make great strides on this program.
Susan's vision loss is her most troubling symptom since it prevents her from communicating – seeing people's eyes and facial expressions and reading anything but extra-large print. We pray for a breakthrough.

With deep sadness, we learned our friend Larry Litherland passed away yesterday after being overcome by the brain tumor that was diagnosed earlier this year. Susan and I were joined ironically with Larry and Laura on parallel journeys we did not expect or want. Larry's brain surgery occurred several weeks before we found out about Susan's tumor; and with tumors on the left frontal lobe, they had matching incisions. We would see them at LB Memorial Radiation Oncology when Larry and Susan had radiation therapy together for a while, and we'd compare notes and encourage & pray for each other over the months. The couple we had known earlier as our friend Greg's parents became dear to us as we shared the hardships and uncertainty of life-altering illness. Our hearts break for Laura as she grieves the loss of her high school sweetheart, and we join her in gratitude that Larry is with the Lord and had a peaceful passing. We lift the Litherland family in prayer and sympathy.

Discharged, Thanksgiving, hospitalized, discharged

Wed 11/21/07
Susan was discharged from UCLA Med Center today after her 14-day hospitalization and will be taking antifungal medication indefinitely to counter meningitis. She's having mild to moderate pain from surgery to implant her lumbar shunt; but is otherwise strong and alert – and so glad to be home. We are so grateful and encouraged to have her home for Thanksgiving, an answer to our prayers. Next week, she'll resume her evaluation meetings next week with her in-home therapists, and have a scheduled visit with her neuro-oncologist.

I came across the Father's Day card Susan gave me in June, just days before the whole brain tumor event erupted. The text of the card says, "For My Husband – Today is for celebrating the wonderful father you are...and the terrific husband you continue to be (she writes "and you keep getting better!). Happy Father's Day with Love." Then she writes,

Mike, Over the course of this last year, life has seemed to change in our home.
I'm feeling upset with my housekeeping, but I don't seem to have the energy to
overcome it all. I have made up my mind to do my best to get back up to speed –
especially once we figure out this headache thing. I just want you to know how
thankful I am for who you are, and I appreciate you more than I could ever
explain. Things will improve, I promise! In the meantime, thank you for all you
do! Susan"

Aside from the poignancy of her words these months later, I am struck by just how much I love my wife. She's an exceptional person in so many ways, and the perfect companion for me. I love the quality of her character, and how even with all she's been through (and couldn't have known on Father's Day), she still has made up her mind to get back up to speed. What a woman.

Our Pastor Ken asked me to share in 3-4 minutes at our Thanksgiving services last week why I'm thankful to God. It was a powerful worship service and a privilege to be among God's people. Here are my comments.

Thanksgiving 2007
Susan was treated for breast cancer in 2006, an event that allowed us to revisit our priorities and draw us closer to God and to each other. We are thankful for that outcome. Since July of this year, she’s being treated for a malignant brain tumor, an event that has turned our lives upside down and left us wondering what is to come. In the span of only a few months, every area of our lives has been affected, and everything is different now. But in the midst of such upheaval, God has not changed. He is still God, he is still on his throne, and he is still good. He is still the Lord
and the giver of life. Life is his gift; and we thank him for it. The Lord is my shepherd; I shall not be in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul. He guides me in paths of righteousness for His name’s sake.

Learning that Susan’s type of brain tumor, called grade IV glioblastoma multiforme, does not offer a long life expectancy from a medical perspective, I realized this summer we may not grow old together like we thought we would. Then I realized that’s
always been true – anything can happen to any of us at any time, and sometimes
it does. We all are mortal. Eventually, either Susan or I will have to lay the
other down. God does not guarantee a long life, or a painless life, or a trouble-free life. What He does promise, though, is His presence. God Himself is with us – always. He will never leave us. It’s not in his nature. So we thank God for his presence. Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me. Your rod and Your staff, they comfort me.

With life broken down to such a basic level, we are aware that God meets our needs each day – physically, mentally, financially, emotionally, and spiritually. The church, his body, is an awesome display of his compassion and provision for us. I don’t know how it works, but it seems whenever we have had a need, someone from church has been there. You are amazing people! Individuals and families have provided groceries, dinners, help with bills, gas cards, housecleaning, yard work, and relief
outings for our kids. We have received hundreds of greeting cards and emails,
and countless prayers that have carried us along. There are over 15 ladies who
volunteer to take turns on weekday shifts to be with Susan and help her with
therapy, allowing me time to work. Could we ever count the value of what you
have given? And could we ever thank you enough for it? You have been a lifeline
for us; and we thank you, and we thank God for you. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.

While we know that a malignant brain tumor is a menacing threat, we also know that with God, all things are possible. Glioblastoma is a name – but Jesus is the name above all names. The one thing that gets us through, the x-factor, the difference maker, is another gift – our hope in Christ. We stand with the three Hebrews who faced the fire and said “Our God is able to save us, he will save us; and if he doesn’t – we still trust him.” While we pursue the Lord for healing, he is meeting us in the
mystery of affliction with this amazing notion that in spite of our circumstances,
everything is ok. Even in the face of death, everything is ok. We have life in the Lord, and nothing can touch us. We are grateful for this hope, because without it, we would have crumbled a long time ago. Surely goodness and mercy will follow me all the days of my life, and I will dwell in the house of the Lord forever.

Wed 11/28/07
I brought Susan back to UCLA Med Center on Monday afternoon with another low-grade fever, persistent headache, and fatigue. She evidently has a urinary tract infection (now that's a new one) and is being treated with antibiotics. Meanwhile, the neuro staff are making adjustments to the valve in her l-p shunt to correct the flow of spinal fluid that drains into her body, a delicate balance. It looks like this hospital visit will be pretty routine and short-lived, thankfully. She may be discharged tomorrow.

Fri 11/30/07
Susan is home again after only a three-day hospital stay, thankfully. While early tests indicated she might have a urinary tract infection, the more complete tests were negative. Also, after several days of trying to adjust the magnetic valve in her lumbar shunt, the task proved too elusive for the neuro team, and they left well enough alone when Susan's symptoms improved. So, Susan had no new infection, and her fever, headache, and nausea gradually went away. The neuro team believes she may have caught a virus or something over the Thanksgiving holiday. At any rate, we're glad she's home.

Surgeries for both of us

Tue 11/13/07
Susan will receive her antibiotic and antifungal treatment for a full ten days (through Saturday), after which the infectious disease team may release her to have her shunts implanted. We hope she'll be home for Thanksgiving. She continued to make good progress, was moved to a semi-private room on the neuro ward, and began doing some physical therapy and taking a walk or two. It pleases me greatly to hear her speak of "achieving my goals for the day."
Here's a fine new term for me: "laparoscopic cholecystectomy," the name of the surgery I'll have on Friday to remove my gall bladder. (Perhaps I'm destined to write a medical encyclopedia from experience. Go ahead – ask me about the common bile duct.) I met with the man behind the knife today, Kent Azaren MD, a kind and experienced general surgeon who took time to educate me about the procedure and why I need it. It's an outpatient affair that will send me home after post-op to lay low for a week. Bring it on.

Mon 11/19/07
After making continued progress through the weekend against infection, Susan underwent surgery today to have a shunt implanted. Rather than draining from her brain (a ventricular shunt), her neurosurgeon opted to drain from her lower spine into her abdomen (a lumbo-peritoneal shunt). The effect is the same – allowing her body to have the proper amount of fluid flowing around the brain and spine, and preventing the harmful pressure of fluid build-up. The procedure took about 3-4 hours under general anesthesia, and thankfully was successful and lacked complications. See the "Selected Links" page for more info about CSF shunts. She is resting this evening with treatment for moderate pain. Her UCLA medical team will evaluate her progress tomorrow for possible discharge on Wednesday – we're hoping for that.
Meanwhile, I had successful outpatient surgery on Friday to remove my gallbladder. Someone asked where I was going to have the operation done. I said "near my liver." When I say "outpatient," it was more like "drive-thru." You know, show your insurance card at the first window and make sure you ask for ketchup and check your order at the second window before you pull away. "You want anesthesia with that?" I now have four holes in my belly, I think the target kept squishing out of the way so he kept poking. Actually, Dr Kent Azaren and the pros at the Surgery Center of Long Beach did a phenomenal job with an extremely high level of care. It was altogether such a pleasant experience, I'm trying to think of something else I can have cut out just so I can go back. They even have warm blankets. I've had a typical amount of post-op pain that is nothing like a gall bladder attack and has diminished each day. I'm thankful to put this chapter to rest.

As Susan's latest hospitalization grinds on and I recover from gallbladder surgery at home, we miss each other greatly. I'm resigned to the idea that she'll need to stay at UCLA over the Thanksgiving holiday – and if she's released earlier, it will be a gift. It's more important that she comes home when she's ready, when she's well enough. Meanwhile, the Sovereign God is ever faithful and is bigger than all our problems and every situation. He has all of us in his hands and will work out his good plans for us in his time.