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.

A longer stay at UCLA

Fri 11/10/07
Austin and Adam joined me this afternoon to visit Susan, taking turns to meet the two-at-a-time limit in the NTCU. She had vomited in the am, but rested later and was able to eat lunch. I was thankful to be there for first-hand information when the neuro team made rounds at 4pm. Since fungi grow more slowly than bacteria, they take longer to eliminate. Even the initial fungal culture from Wed will not have developed until Sat or Sun. As a result, Susan will need to be hospitalized for at least a week or more until the infection is negative and the shunts can be placed. She's not happy about the idea, but she understands it's necessary.
Susan had the PICC line installed yesterday, replacing the small-volume line they had placed in her foot. IVs are a continual problem for her since she's limited to her left side after breast cancer treatment and right-side lymph node removal. Her left arm is full of scar tissue after five hospital stays and dozens of blood draws, so the PICC line really helps.

Sun 11/11/07
With frequent nausea and vomiting, fatigue and confusion, this was a difficult weekend for Susan. Her doctors have not confirmed absolutely what meningitis organism she's fighting since her blood and spinal fluid cultures from Wed/Thu are still growing, so she's on a shotgun approach of antifungals and antibiotics like last time. However, it appears this time one of the antibiotics is causing her nausea and requires premedication to prevent it. We hope it provides relief.

Mon 11/12/07
We thank God that Susan has improved and had her best day yet – no nausea, with greater strength and alertness. In a development that is confusing for me, she has tested negative for infection. This is good news along with her general progress; but it doesn't explain why the meningitis returned. If the Lord wants to heal it outright, we'll take it, and anticipate the doctors' upcoming reports.

Another beautiful realization came to rest with us today. God never promised we would not have troubles, nor did He guarantee he would take our troubles away – but He has given us something that is greater, His faithful assurance that He is always with us. It's better to go through tough times with God than have it easy and never know Him.

Yet another hospitalization

Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.

Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.

Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.

We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.

Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.

Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.