Thursday, December 28, 2006

We all traveled up to Grass Valley where Karen's parents live and had a very nice Christmas all in all. As it happened, however, Christmas seems to have marked the lowest point in how Karen has felt since treatments started.

The good news is that today was the last of Karen's treatments and since yesterday she has been feeling a bit better each day. I've seen her smile more today than I have seen in far too long. Thank you all for your fervent prayers and steady affections. We are eagerly looking forward to Karen getting her voice and energy back. It looks as if she is headed in the direction of health.

I'll fill you all in early next week as to what the next steps are. We know there are MRI's, blood tests, and appointments but aside from that we will need to talk to both our John Muir and our UCSF doctors to determine the details.

We hope you all have a very happy new year!

Thursday, December 21, 2006

Hi everyone. I just wanted to ask you all quickly for prayer. Karen, as you well know, has not really complained once during this whole process but last night her throat was so sore she was having a lot of difficulty even swallowing sips of water. She even sent out an email this morning asking for prayer for her throat which means she is truly concerned. Please pray that as we inch closer to the end of the radiation that her throat gets no worse and is able to heal quickly.

I spoke to the Radiation Oncologist today because Karen asked if we could postpone today's throat treatment. He said that at this point one more treatment will make no difference to her discomfort and that it is better that we just get it done and out of the way so she can heal. He will be providing some stronger pain medication today which he said should help.

Thank you all for your continued prayers on her behalf.

Dave

Saturday, December 16, 2006

Give thanks to the Lord, for he is good. His love endures forever. Give thanks to the God of gods. His love endures forever. Give thanks to the Lord of lords: His love endures forever. To him who alone does great wonders, His love endures forever. Who by his understanding made the heavens, His love endures forever. Who spread out the earth upon the waters, His love endures forever. Who made the great lights-- His love endures forever. The sun to govern the day, His love endures forever. The moon and stars to govern the night; His love endures forever.
Psalm 136:1-9

If our perspective were limited to the discomforts that Karen experienced each day, then this week we would have had reason to fear the future. As would be expected this far into her treatments each day gets just a little bit harder than the day before. The ‘sunburn’ on her head, neck, back and chest continues to deepen. What little hair she still has continues to dutifully fall out each day. The battle with her gag reflex is constant from the time she wakes until her head hits the pillow. By the end of the day her voice just sort of gives out and stops working except for muffled whispers.

However, (and that is a very important conjunction) God has been gracious to give us a better perspective. The daily discomforts are not all there is to Karen’s story, and even in the midst of these pains and discomforts God still provides her with everything she needs to make it through each moment.

To talk this way runs the risk of sounding like trite Pollyannaish optimism. That really is not our perspective at all. The perspective that Karen and I have been given is earthy and uncomfortable on the one hand and satisfying and glorious on the other hand. As with much of the Christian view of things, life is full of perfectly fit together paradoxes. These aren’t irrational leaps of faith, but a salty realization that as creatures we don’t know everything and we won’t be privy to all the answers even in Glory.

So we are left with that rushing anxious sense that we are falling through life, but not toward the unknown. We are falling into the hands of Christ our redeemer. Trusting in him is not irrational it is the most sane decision anyone can choose to make. And this trust extends not simply to the saving of our souls for eternity but also to the daily ordinary earthly concerns that make up most days. So I hope that what might sound like a “make the best of it” optimism can instead be understood in light of this greater context.

First, we are encouraged by the knowledge that with the close of each treatment we are another step closer to concluding the whole process. There is an end in sight. Furthermore, we found out on Friday that rather than an additional eight days, Karen only has to do an additional five. The extra three treatments might sound trifling, but no one would want to get punched even one more time than necessary and the same goes for having radiation pointed at your body.

Secondly, we are reminded every so often that the diagnosis and prognosis three months ago was dire and that God has already demonstrated his fatherly care in continuing to provide us with healing and a steady diet of good news. Things could be a lot worse, they appeared that way in the beginning, and we are glad that that was not the path God chose to have us walk right now.

Finally, we know that God is orchestrating this situation for his own good purposes. Though we don’t know why he needed to ordain things to come to pass exactly this way we are satisfied knowing that it is his hands that are fashioning our story.

We are very thankful that her last day will be the 26th of this month and that her complete healing can then begin. We are also looking forward to finding ways to bless you all. I shake my head in amazement daily at the truly remarkable generosity that you have all shown to us. I really do hope you all know how thankful we are for you. I know that you do not desire to receive anything in return for your kindness, but it will be nice to find ways to bless you all as the weeks, months and years wax on.

Friday, December 08, 2006

Sing joyfully to the Lord, you righteous; it is fitting for the upright to praise him. Praise the Lord with the harp; make music to him on the ten-stringed lyre. Sing to him a new song; play skillfully, and shout for joy. For the word of the Lord is right and true; he is faithful in all he does.
Psalm 33:1-4

It is true that God is faithful in all that he does. We are thankful that this week began and ended with him demonstrating his faithfulness to us with answered prayers.

The week began with what we thouhgt would be another 4 hour MRI. As we prepared for the MRI we were concerned that Karen continue to have the terrible coughing and gagging during the MRI that have plagued her for the past few weeks. We were also concerned that laying on her back for all that time would be extremely painful particularly for her head which is very sensative right now. So we prayed, as many of you were as the week began.

I was surprised to get a call from Karen a full hour and a half before she was supposed to be done. Somehow the MRI technician was able to get her in and out of the machine in two and a half hours. Better yet Karen only coughed once and her head felt good the whole time.

The week ended a few hours ago as we recieved really good news from the radiation oncologist Dr. Massullo after he got the results of the MRI. The tumor is responding extremely well to the radiation. The tumor in Karen's brain has not grown at all or moved into the cavity created by the surgery. Furthermore the tumor in her lumbar region has all but disapeared leaving only some residual scarring where the tumor was. There is only residual tumor left in her thoracic and cervical regions as well.

Needless to say, we are very happy and very thankful.

Thank you all for your consistent prayers.

Sunday, December 03, 2006

I just want to let you all know that Karen will be going in for another 4 hour MRI tomorrow (Monday). Karen will not be having her radiation treatment tomorrow. In light of the radiation she's been going through she's actually looking forward to haveing the day off. I guess that's why I haven't written to you all earlier about this.It's amazing how one's perspective can change.

Please pray that Karen will not cough too much during the MRI; given the sensativity of her throat right now the results of this could make a big mess in a multi million dollar machine.

Also please pray that her head will not hurt to much having to lay there for so long.

We continue to be ever thankful for your prayers and support.

Thursday, November 30, 2006

Karen is continuing to do well and her spirits remain high but that is in spite of the fact that she feels, as she calls it “puny” all the time. She’s running a discomfort marathon of sorts, punctuated by intermittent obstacle courses of gagging and clogged drains. The gagging is due to the radiation causing her throat to become very sensitive and sore. The clogged drains are due to the chunks of hair that are falling out through the day. Through it all Karen continues to be as steady as ever. I catch myself shaking my head in amazement sometimes. I'm not so sure I'd be so steady.
I did take some pictures to try to give you all a better idea what Karen experiences each day.

This is a picture of Karen after she's just gotten suited up before treatment.

This is a picture right after Karen took a shot of "soothing citrus" chloraseptic to help sooth her throat. That turned out to be a bad idea. She hasn't done that since.

This is a picture of the radiation machine. the big arm actually swings around to shoot at different parts of the patients body.

This is a picture of Karen laying face down on the radiation machine. The techs are maching laser lights that are projected from the walls with tatoos on Karens back and with marks on Karen's helmet. In this picture you can see the helmet that is locked onto the table. There are marks on the helmet on masking tape that show you exactly where the radiation is projected. You can also see one of the lasers on the far wall that projects the lines onto her back thatthe techs use to line her up with the machine.

After the treatment yesterday I took Karen out to a matinee. We went to see “Stranger than Fiction”. It’s the new Will Farrell movie billed as a romantic comedy. I personally thought that the movie was great. The characters were very interesting, the plot was creative and captivating, and the themes that the movie explored were very appropriate to what we are experiencing right now. The movie dealt with the question of tragedy in life. It made me think again about how we try to make sense of suffering.

As we explain the pains and discomforts that Karen is experiencing I hope that you are all putting these things into context in at least two ways. The first is that it is important to see these things in contrast to what Christ had to suffer. What he suffered he did so willingly as a righteous man., What we suffer we do so as guilty men who in our hearts beat our chests and ask “why?!” deceiving ourselves that we deserve better than what we’re getting.

Secondly, we must appreciate that this pain and suffering is part of the great story of history that God is breathing out over time. All of its comedy as well as its tragedy are perfectly placed. He is the master author and we are the characters that he loves. That he loves his people means that the tragedy is not capricious, mean or pointless. That we are characters means that we are his creation and we are not privy to know all the reasons why he has written our particular parts the way he has. We can be confident, however, that for those who love him, when we are finally able to look back at the whole story we’ll see that each part of the plot was necessary to make it truly beautiful.

Thursday, November 23, 2006

Again I saw something meaningless under the sun: There was a man all alone; he had neither son nor brother. There was no end to his toil, yet his eyes were not content with his wealth. "For whom am I toiling," he asked, "and why am I depriving myself of enjoyment?" This too is meaningless-- a miserable business! Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.
Ecclesiastes 4:7-12

I know that I've been slow to update the blog this week. Last week went quite well, but the past three days have really begun to show how progressively more difficult the radiation will be. One of the nurses compared radiation to a bruise that is hit each day. The first part of the treatment is not that noticeable but as the radiation continues to hit the tissue it becomes more and more sensitive and the effects become further pronounced.

While the Zofran has taken the bulk of the nausea away, this week nausea has continued to haunt her and she’s never felt quite right. That culminated last night in the sink (if you catch my not so subtle inference).

This morning she’s doing better in that regard, but the new symptom that popped up on Sunday was a chronic sore throat. This is not, as some of you may be guessing, a result of a suppressed immune system. In fact, the radiation should not (and has not to date) had any significant impact on her white blood cell count. The sore throat is due to the radiation being given to her spine that reaches through to the soft tissue in her throat and makes it feel like she has a perpetual cold.

Her hair is still hanging on though. The only potential precursor to her losing her glory is that her scalp has started to feel tender and itchy.

So let’s sum up …
  • Nausea
  • Chills
  • Fatigue
  • Sore Throat
  • Headache
  • Dry Mouth
  • Itchy and sensitive scalp

If I didn’t know better I’d diagnose her symptoms as the perfect storm of a flu, a cold and dandruff. At least this is all temporary.

There has been some good news this week. The 2nd opinion pathology report came back yesterday and the good news is that the Mayo Clinic pathologists concur that the cancer is indeed Tanycytic Ependymoma. We are thankful for that because it means that we are still dealing with a typically manageable cancer.

Also, Karen had her teeth cleaned recently because radiation can induce an environment conducive to cavity creation. I am proud to announce that she came away with a clean bill of dental health.

In the midst of the chronic discomfort that Karen is experiencing all of this is made bearable as we see God’s grace extended toward us daily in your love and generosity. Your love toward us was astounding when this all began happening, but more than two months later you continue to stand by us and it’s this consistent care that gives a fullness to the concept of “long-suffering.” Thank you all for your continued prayer and support.

Thursday, November 16, 2006

“Oh give thanks to the Lord, call upon his name; Make known his deeds among the peoples. Sing to him, sing praises to Him; Speak of all His wonders. Glory in his holy name; let the heart of those who seek the Lord be glad”

1 Chronicles 16:8-10

There are many reasons for us “to give thanks to the Lord” not the least of which is that today was another good day for Karen. Compared to this past Thursday when the thought of six weeks full of days like that one was too much for Karen to bare, today was an utter joy.

In the passage above the Psalmist tells us to “make known his deeds among the peoples”. It’s natural for those who are familiar with the history of how God has been saving and protecting his people throughout history for grand images to come to mind when we think of “his deeds.” The parting of the Red Sea and Esther’s rescuing of Israel from holocaust are beautiful pictures of how God extends his grace to those he loves. The chief picture of God’s great love, of course, was demonstrated when he sent his only son to suffer the indignities of the cross and ultimately to die, not for his own sins, but for those for whom he loves.

It is interesting, however, that the “deeds” of God are not restricted to those of magnificent proportions. God is at the bottom of even the smallest of events that takes place. As the Psalmist says elsewhere:


“Where can I go from your spirit? Or where can I flee from your presence? If I
ascend to heaven you are there; If I make my bed in Sheol, behold you are there.
If I take the wings of the dawn, if I dwell in the remotest part of the sea,
even there Thy hand will lead me and thy right hand will lay hold of me.” Psalm
139:7-10.

I imagine that for some people the idea that we are unable to escape God’s hands might sound threatening or dangerous or like our rights to autonomy are somehow being violated. But for those who God has graciously called and who rest in Christ’s work on the cross, the idea that there is no place we can go to escape from God’s hands becomes a comfort. What child would want to run from the loving arms of a protecting father?

It is remarkable to consider that all the things God has done for Karen, though seemingly small in the grand sweep of history, are in reality some of the many wonderful deeds that the Psalmist commends us to “make known … among the peoples.”

“Let the heart of those who seek the Lord be glad”

Tuesday, November 14, 2006

The urgency of crisis has long since passed and has been replaced by the more subtle reminders that pop up at intervals throughout the day reminding us that life is moving forward but doesn’t look normal at all. The extremes of crisis make great fodder for writing and are also a sure fire remedy for writers block. Not long before Karen’s emergency I joked that the best artists are malcontent and deeply troubled. The tension in a life full of darkness and struggle tends to force one to confront the difficult subjects that the normal person rarely thinks about amidst the many distractions that lay within reach of the typical modern.

I don’t believe that I have ever been a malcontent and I don’t possess any allusions that this blog will find itself on a shelf next to any great author. I do, however, understand how a crisis can arouse in a person a sensitivity to these deeper themes. Now that the sense of crisis is gone, though, I find that the words don’t flow quite as easily.

So as we were chatting at dinner tonight about how things are going I asked if she would say a few words to you all. So here goes.

-------

My dearest husband has made quite an impression on you all (and me too!) with his delightful writing abilities. Mine aren't nearly as entertaining, but here goes...

I am really grateful that the radiation treatment only takes between 10 and 20 minutes now, rather than the 30+ minutes during the 2 days of preparation that were so intense they left me in tears. It’s getting easier now to make it through the daily struggle because the time with my face smashed on the table has been getting shorter as the days go on. I work hard to keep my focus elsewhere during the radiation. By occasionally closing my jaw I can move the pressure on my face from one part to another. Swallowing is also difficult so as the machine moves from one field to another I do my best to swallow a bit.

I also try to make the time pass by counting during each portion of the radiation treatment. So far it appears that I can count to around 30 for each side of my head and around 60 for both the top and bottom of my spine.

The best part is that when it’s all over my forehead and cheeks have large unattractive red indentations that remain prominently displayed for about an hour afterward. Thankfully the office is filled with a delightful and loving group of doctors, nurses and technicians. Yesterday I was getting really anxious as we drove to the appointment. I thought for sure I’d need to take some anti-anxiety medicine in order to make it through, but surprisingly after I got to the radiation center the staff there were so loving I was able to make it through without drugs and it was the easiest time yet.

Overall I'm happy to say that today (Tuesday) is the first day since I started on Thursday that I haven't been feeling pretty yucky. I can only hope that each of the next several days are like today...I want to let you all know how amazed I am by your devotion, prayers and generosity. Endless thank yous to you all!

Thursday, November 09, 2006

Today was Karen's first radiation treatment. The actual treatment went much better than the planning session yesterday. The primary reason for this was that it was much shorter.

Karen decided not to use the anti anxiety meds that the doctor had recommended that she try because she really wasn’t anxious about the procedure and it hadn’t helped the day before. Instead she tried a Vicadin to try to cut the pain a bit. In the end she doesn't think the vicadin helped so my guess is that tomorrow she'll be goin' hippie and not using any drugs at all. Actually, I guess that means that she'd be goin' anti hippie ... now I'm confused. Do hippies use drugs or not? Do they avoid legal drugs and only use illicit substances? Maybe they avoid drugs developed by corporations and stick to cottage industry “remedies.” In any case, since tomorrow’s procedure should be even shorter she doesn’t think she’ll need anything for the pain.

Unfortunately, a few hours after we got back from the hospital Karen started feeling really nauseous and got progressively worse as the day dragged on. She got many of the symptoms of a flu: vomiting, headache, chills, fatigue etc. When things didn’t get better on their own I called the radiation folks and asked them what we should do. They were really great and got a prescription sent over right away to our pharmacist. The good news is that the stuff that they prescribed is the best anti nausea medicine available today and that it worked really well. The bad news is that they only prescribe 2 pills at a time and the cost for each pill could provide your local yuppie (not to be confused with hippie) with fresh brewed Starbucks for about five weeks. (No joke).

I have to say, that at least for tonight it was worth the cost. Karen almost immediately felt better and as of about two minutes ago only had a light headache. She even ate the grilled cheese sandwiches I made for dinner! If that isn’t evidence of her dramatic turn around then I don’t know what would be. :)

As always thank you for your continued prayers.

Monday, November 06, 2006

But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions--it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus.
Ephesians 2:4-7

I’ve been told that many of you have been tapping your fingers impatiently on your desks waiting for an update on Karen. I am sorry to have waited so long but a lot happened this week and so I wanted to wait until we got to the end of it to let you all know what is going on.

On Wednesday we went to the initial consult with the radiation oncologist in Walnut Creek (John Muir Medical Center) where Karen will be getting her radiation treatments. This location is much closer to us than UCSF and was highly recommended by the team in San Francisco. Our radiation oncologist there has been in the business for decades and is very experienced and self described as “pedantic.” He said this is a good trait in a radiation oncologist considering he’s going to be pointing radiation at Karen’s head and spine and could paralyze her if he doesn’t pedantically plan the dosage and angles.

This appointment, as most are, was punctuated by many periods of waiting. As I’d forgotten to bring some reading material I was entertained as we moved from room to room by the different reading material that was made available in the form of thousands of magazines. As we entered another waiting area I reached over and started rummaging through one of the stacks. I quickly passed over “Vogue” and “Bay Area Mother” and picked up “The Economist.”

On of the articles that caught my eye (to no one’s surprise) was a feature on a very successful executive who had been diagnosed with terminal cancer and who, together with his wife, co-authored a book about his experiences over the next 6 months until his death. I’ll admit that I didn’t have the opportunity to read the whole article, but what I did read got me to thinking. This admittedly successful man handled his cancer and his imminent death with what anyone would call a kind of calm and purpose. However, I was primarily interested in how this man turned to meditation as a means of calming himself and remaining focused as he entered his last days of life.

This interested me because it got me to thinking about how Karen has viewed her “spirituality” in the context of her cancer. Meditation, as I understand it is practiced by most westerners today, is primarily about clearing ones mind and focusing one’s attention on a specific thought. I asked myself, “what was this man focusing his attention on? Did the object of his meditation really matter? Was all that mattered that he found it helpful? How does his experience in turning to meditation compare and contrast with how Karen is dealing with her own cancer?”

These series of questions reminded me of something I wrote early on in the blog as I wrote about faith. I talked about how the most vital part of faith is what you are placing your faith in. As I read about how this very successful, driven, thoughtful executive turned to meditation the fundamental question remained the same. What was he meditating ON? What was the object of his meditation?

John Calvin talks about something similar in his Institutes. In chapter 4 he is discussing how the natural and inescapable nature of man is to smother and corrupt their knowledge of God. Unless God reaches down, interferes in our lives, and changes our hearts, no one would want to seek after God to discover who he is as he has revealed HIMSELF. In this context he writes:


“Indeed, vanity joined with pride can be detected in the fact that, in seeking God, miserable men do not rise above themselves as they should, but measure him by the yardstick of their own carnal stupidity, and neglect sound investigation; thus out of curiosity they fly off into empty speculation.

They do not apprehend God as he offers HIMSELF, but imagine him as they have fashioned him in their own presumption.

When this gulf opens, whatever direction they move their feet they cannot but plunge headlong into ruin. Indeed, whatever afterwards they attempt by way of worship or service of God, they cannot bring as tribute to HIM, for they are worshiping not God but a figment and dream of their own heart.”

As I think about the many things God has done for our family I am utterly speechless. By his grace he has showered his mercy on our family and opened our eyes that we might see him as he has revealed himself. Karen and I thank him that he is continuing to wash away the residue of our own presumption, speculation and stupidity. We know that he is using this time of struggle as a means of refining us so that as we meditate on his word, THE Word, our meditation has the express purpose of bringing into more vivid focus the awesome character of our saving God.

When the doctor finally met us in the conference room, most of the information he gave us was basically the same as what the radiation oncologist in SF gave us. It was interesting, though, to see the nuances of difference in the way he presented the info and what bits he gave us that the other specialist didn’t. I also cracked a smile when toward the end of the meeting he asked us if his plan was different in any way than what would have been prescribed at UCSF. I guess I shouldn’t be surprised at this friendly professional comparison. All in all the meeting went well and Karen was in good spirits.Thursday we drove to San Francisco (UCSF) to have a CaT scan done of Karen's chest, abdomen and pelvis. Our Neuro Oncologist ordered up this CaT scan as a conservative precaution to make sure that the cancer had not spread to the rest of Karen’s body. The CaT scan was a totally different experience than the MRI. It was extremely fast and she didn’t even have to disrobe. I don’t think she was in the machine more than 10 minutes from start to finish. The good news is that we got a call from the doctor yesterday and after reviewing the CaT scans there does not appear to be any cancer in her body except for her brain and spine. No surprises there.

Though Wednesday and Thursday were filled with lot’s of doctors and nurses they were both pretty easy days. Friday’s appointment was of quite a different character. We went back to John Muir for the radiation "planning session." This became another one of those moments that drives reality home regarding how hard the next 6 weeks are going to be.

The purpose of this appointment was to get her body oriented in the machine. They had her lay face down on the bed of the radiation machine with her face pressed against an apparatus used to hold her head still. A plastic mold was form fitted to the back of her head to additionally secure her body from moving. Her head, was thus, squeezed in a kind of vice grip.

Unfortunately this important and necessary apparatus used to prevent her from moving, squeezed her face so hard that it was almost unbearable. It was all she could do to keep from breaking down into tears because of the pain. The physical pain was only made worse by the mental strain of trying desperately not to cry for fear that if she did she’d move and mess the process up and she’d have to stay trapped in this device longer. So Karen fought back the tears and tried her best to bear up under the pain.

I had no idea this was going on in the room next door. I was content to have my attention bounce back and forth between my book on President Andrew Jackson, the “Today show” that was playing on the TV above me, and the small sea of seemingly happy cancer patients that surrounded me. I was not all that concerned that Karen would be in discomfort because every indication we’d been given up to this point was that the process would be painless.

Apparently the pain that Karen experienced is unusual. The technicians explained that it was due to the fact that she has so little “padding” on her body. The technicians tried to encourage her by praising her for how easy it was for them to “find her spine.” I guess the obesity epidemic in the U.S. has real implications on the ability of radiation technicians to efficiently do their job. So as the moments elapsed Karen tried desperately to control her emotions. As the process came to an end Karen finally broke down into tears as the technicians informed her that though the future sessions would be shorter, that if the first session was painful they would all be just as painful.

As I looked up from my book and saw her walking toward me the first thing I noticed as she entered the waiting room was how pink and puffy her face looked. I furrowed my brows quizzically trying to process what that actually indicated. Had she simply fallen asleep or had she been crying? Then I noticed her eyes. It wasn’t really the fact that they too were pink and puffy that clued me in. Honestly, they acted for a moment like the proverbial “windows into the soul” I could just tell as I looked into them that something was really not right.

The pain had triggered the weight of reality to further press down on her and this produced more tears, I think, than the pain did. Waves of emotion passed over her throughout the rest of the appointment but the storm did calm as the day progressed. Mike and Michelle flew in that morning to spend the weekend with us and their arrival provided the perfect distraction to help Karen put the morning behind her.

Before we left the appointment, our doctor informed us that next Wednesday will be the follow-up planning session. This will entail Karen laying on that same contraption while they take Xrays of the exact locations on her brain and spine that will be radiated. This is a dry run that will allow the doctor to see the precise location where the radiation will go. He’ll be able to further refine the radiation plan including dosage and angles to make sure the plan is perfect before they actually start the radiation treatments the next day. Please pray that this goes quickly because it could drag on and every moment in that contraption is truly agonizing.

Also, as I mentioned in a previous blog entry, our oncologist is having the pathology of the tumor reviewed again. He wants a second opinion to confirm tanacytic ependymoma. Thus he has sent the sample away to Mayo Clinic to be reviewed by a totally new set of pathologists. We won’t hear back on this for about another two weeks.

In the mean time, as Karen begins radiation next week, we ask that you continue to pray for Karen. Please pray for the pain she experienced while being strapped down, for effectiveness of the treatments and for no long term side effects.

Saturday, October 28, 2006

Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them slip from your heart as long as you live. Teach them to your children and to their children after them.
Deuteronomy 4:9

Karen and I were extremely happy with ourselves Thursday afternoon. We worked very hard to get to our 3:00PM appointment with the radiation oncologist on time. In fact we got to the appointment early! This was quite a feat considering that on the way there we had to drop Hannah off at ballet, deliver paperwork to one of my customers, drop my Mom off at her house, and then brave the traffic into San Francisco.

We were quickly humbled in our short lived triumph, however, when the gentleman who checked us in informed us that we were actually late to our appointment. By 2 hours! Our appointment was apparently at 1:00PM … oops ... my bad. Fortunately they were willing and able to see us.

As anyone who has gone to a doctor’s office will be intimately aware, even the most efficient and well oiled doctors offices still make you wait for inordinately long periods for the doctor to arrive. Maybe making us wait for their imminent arrival is a scheme developed generations ago by some of the first physicians to generate a sense of suspense and to make the doctor feel important. Or, maybe they’re all just bad at staying on schedule. Or, maybe there’s a lot of inconsiderate patients who arrive two hours late to their appointments and throw the doctor’s immaculately conceived schedules off for the whole day. In any case, we knew that at least in this one case we deserved the long wait and so we passed the time dutifully and without one word of complaint until the doctor arrived.

Actually, because UCSF is a teaching hospital it is usually the lowly neophyte med student who sees you first. They ask preliminary questions and do standard neurological tests the result of which will then be delivered by the student to the doctor in an academic version of the “telephone game”. It’s during this preliminary examination that the med students practice their textbook bed side manner that always seems a bit awkward when applied in real life. I must say I wonder sometimes if the sympathetic nods, grunts and other gesticulations that these med students make are truly genuine and if the almost eager interest in our case stems from a deep seeded concern for our well being or from an eagerness to finally be working on a real person. In spite of my natural suspicion I do believe that our med student that day was one of the genuine ones and so I was entertained as I always am as he went through his regimen of neurological tests that they use to asses general gross motor function.

The reason I always get a kick out of watching these tests performed on Karen is because she is in a word, competetive. I hold my breath in anticipation just waiting for the look of surprise and maybe even stifled fear each time a new doctor performs this test for the first time and says “push against my hand as hard as you can with your leg.” As soon as that simple command is issued the doctor and his chair (regardless of size, weight, or position) are promptly catepulted a foot or so back from his or her starting position. It is also immediately followed by a subtle look of satisfaction on Karen’s face.

After the med student was done with his tests and questions he left the room to consult with the doctor who eventually came to talk to us. I must say that I really liked her. She was very clear and descriptive about what Karen should expect from the radiation. In fact, she was extremely generous with her time considering that we arrived at 3:00 and she is usually gone by then. When all was said and done she stayed with us until 6:00PM.

She even scavenged the halls for a laptop on which to show us on the MRI scans where the tumor is located on Karen’s spine. If you look at the picture below you can see the yellow arrow pointing to the spinal cord (a black cord running up and down the MRI). The green arrow is pointing to the white cerebral/spinal fluid just to the right of the spinal cord. This bright area should run up and down the whole spinal cord and should appear to be consistently white. As you can see in the scan, however, there is a significant presence of a grey discoloration (I have two red arrows pointing to some of the grey areas to give you some perspective. The grey areas are the cancer and as such should not be there. Given the significant presence of cancer, you can now see why the doctors agree that it is really important that they radiate this stuff right away.


The good news continues to be that ependymomas typically respond very well to radiation. According to the radiation oncologist treatment is considered successful when the tumor stops growing. Their expectation is that radiation will probably prevent Karen’s tumor from growing anymore and may even shrink what is already there. This, as always, is not a guarantee or a certainty, but it is what they expect to see given how ependymomas typically respond.

The doctors want the radiation to begin no later than two weeks from this past Thursday. Once it begins the sessions will go for six weeks, Monday through Friday, and will last between 15 and 20 minutes. This will be a more aggressive radiation than what they originally intended because the ependymoma has demonstrated that it is more aggressive than initially believed. The first 2/3 of each session will be a mild dose of radiation spread consistently over the whole brain and spine. The last 1/3 of each session will be a more powerful dose focused on the areas of Karen’s brain and spine where there is significant tumor presence.

The potential side effects that Karen may experience during treatment are:

Fatigue. This will progressively increase through the end of the therapy. It should not be to the point of incapacitation, and she can be as active as her body will allow her, but the doctor did say that help around the house will be important.

Hair loss. The radiation oncolgist assures us that she WILL lose all of her hair. This is because her whole head will now be irradiated. It will start to grow back about two months after radiation is over.

Decreased blood count. A decrease in red blood cells, white blood cells or possibly platelettes could occur. If this does occur it will not be to the point of immuno-suppression, but because a decrease is a serious possibility her blood will be monitored weekly to make sure that her counts don’t dip to low.

Skin dryness. Her skin will not be burned and there will be no pain involved, but her skin may become dry. This can be addressed by a simple skin lotion.

Nausea. Because her spine will be getting radiation some of that radiation will go through her stomach which could cause nausea. In order to prevent the discomforts of nausea the doctor will provide anti-nausea medicine from the start to avoid any potential discomfort.

The potential long term radiation side effects are:

Short term memory difficulties. This would manifest itself years down the road. Examples of this could be not remembering all the numbers in a new phone number, or needing to write down a grocery list rather than committing it to memory.

Hormonal regulation problems. This would be caused by potential damage to the pituitary gland which regulates hormones like estrogen, and cortosal. There is about a 40% chance that sometime in the future (between 2 and 40 years from now) her pituitary gland could have trouble producing hormones in the proper amounts. This could be easily treated if it becomes an issue and with yearly level checks they should be able to monitor the levels and respond accordingly.

Fertility problems. Because of potential long term damage to the pituitary gland the hormones that control fertility could be impacted. This could make it difficult to conceive if the needed hormones are not provided in sufficient amounts.

Vision, motor function, balance and language should all be unaffected by the radiation.

Tuesday, October 24, 2006

There are good days. There are bad days. And then there are days like today, somewhere in between, when you are forced to recognize that each new day may take you round a corner that changes your perspective yet once again. We are blessed that the bulk of the past few weeks have been filled with really good days. In terms of Karen's healing things continue to get better each day. Today, however, wasn't terrible but it wasn't good either.

Dr. Prados called this afternoon because he'd had a chance to review the MRIs. When I took his call I actually didn't think that there'd be much to tell. Dr. Prados first asked how Karen's back was feeling. I thought he was just being nice, but it turns out that he was asking because after reviewing the MRIs he found a number of cancer spots on Karen's spinal cord. He thought the pain she had been experiencing in her back and thighs may have been caused by the cancer he'd just discovered there.

I don't know if this is the actual cause of her pain since the pain has totally disappeared, but regardless, I had to inform Karen of this new and disappointing news. I took her outside while the children occupied themselves with "bear and the big blue house". I wanted to speak freely without fear of little ears picking up on words and emotions that so often get misunderstood and mixed up in their young minds. I also wanted to give Karen a context in which she could respond in whatever way came naturally to her. In the end she received the news like one would expect who knows her well.

She didn't cry for herself. Tears came to her eyes when she thought about having to tell her beloved parents the bad news. No one likes to deliver news that you know will disappoint or cause fear especially when you are delivering this news to people who you desperately want to please and whose joy is so closely tied to your own. So as she asked me questions about my conversation with the doctor and heard my answers in response, tears gently rolled down her face.

The tears came not because of the additional discomfort she'd have to undergo with a more aggressive course of radiation or the additional thoughts of uncertainty that seem to attach themselves to this kind of news. The tears welled up because of the mental picture that formed in her mind of delivering this news to her parents. At that moment the first images that filled her thoughts were the sadness in her mother's face and the concern in her father's voice that would inevitably greet us on the other end of the telephone line as the news was delivered.

In the end, however, it is important for us to remember that the prognosis is basically the same as it has been since the beginning. So any sadness we feel isn't fear or dread for the future. It's just a mixture of the disappointment that anyone would feel after getting this kind of bad news mixed with some apprehension about what the radiation treatments will really be like now. The answer to the last question will be a lot clearer after our meeting with the radiation oncologist on Thursday.

What we know at this point is that Dr. Prados found between 7 and 8 cancerous "nodes" on her spine in both the thoracic and lumbar regions of her spine. He also found what he called a "sheet" of cancer on the backside of the same part of her spinal cord. All of these areas appear to be on the surface of the cord rather than in the center, which is a good thing.

This new finding changes the recommended treatment. Initially the recommendation was a focused treatment at the precise site of the tumor and we could do it now or wait. Now that the cancer is in both regions they are not recommending any kind of wait, in fact they are seriously recommending that we do the radiation treatment right away. In addition, the radiation treatment will not be a localized treatment, rather, radiation will be applied to the entire brain and spinal cord. The reason for this more aggressive approach is that now that we know that the cancer has spread the chances of microscopic cancer cells existing in other parts of the neurological system is pretty high. By radiating the entire brain and spine they will be taking any of these unseen little buggers out of commission.

Additionally, because this cancer has manifested so uniquely they are going to take some additional precautions. The first is that Dr. Prados is going to have the pathologists re-diagnose the tumor. Because it spread, which is unusual, he wants to confirm again that we are really dealing with an ependymoma. He said that the pathologists will not like this but that it is important that this get done.

Also, though he's never heard of it happening before, he wants Karen to get a CaT scan to rule out any masses other places in her body. He said that this kind of tumor is not known to spread into other areas of the body but he wants to make sure that this general understanding is verified in Karen's case.

Also, Dr Prados said that if the tumors in her spine were to start growing the first kind of symptoms would most likely be numbness in her limbs. If the tumor were allowed to progress she might experience weakness in her limbs. If the tumor were to progress to a significant degree then she might experience some motor control difficulties.

The good news is that ependymoma of the spinal cord responds just as well to radiation as ependymoma in the brain and the prognosis at this point is not much different than it was before. It just means that the radiation process will be quite a bit more exhausting and that we have some additional areas of her body to which we must now be attentive moving forward.

Thank you all for your continued prayers. Days like today are made so much easier knowing that so many people are continuing to lift Karen up in prayer.

Sunday, October 22, 2006

"The Lord God said, "It is not good for the man to be alone. I will make a helper suitable for him." ... Then the Lord God made a woman from the rib he had taken out of the man, and he brought her to the man. The man said, "This is now bone of my bones and flesh of my flesh."
Genesis2:18, 22-23

Today Karen had her follow-up MRI. Our Neuro Oncologist sent us to an MRI center in San Francisco because there were no openings for another month at UCSF. She had 4 scans done, one brain scan and then one each for the three sections of her spine (Cervical, Thoracic and Lumbar). For those of you who don't know what an MRI is like here's a little taste. The MRI machine is a huge electromagnet that has electricity running through it at all times and is extremely loud. So loud, in fact, that you have to wear ear plugs when you are in the machine.

Imagine the sound of a fax machine hooked up to the sound system at an AC/DC concert, mixed with a jack hammer being used 6 inches from your head, punctuated by R2D2 screaming and the obnoxious banging of woody woodpecker hopped up on steroids.

Here’s a picture of an MRI machine for those of you who has never seen one.The patient lays down on the bed which then moves the patient into the right position in the big donut shaped electromagnet. At that point the concert begins.



In addition to the obnoxious loudness, one of the main discomforts of the traditional MRI machine is that it is extremely claustrophobic. Each scan takes between 40 minutes and an hour, and while you are being scanned you can't move at all. If you move while the scan is taking place you don't get a gold star and a smiley face from the MRI technician. In fact, he has to do the scan over again.

Laying in bed may sound like an easy task considering we spend about eight hours each night slumbering away, however, there are a few important differences. The biggest difference is that while we may not be aware of it we are constantly moving throughout the night, sometimes violently (very violently as many wives can attest who have been accidentally socked in the nose in the middle of the night by her husband’s wayward elbow).

Additionally, it is very unusual for someone to get four scans in a row. "Very unusual" means they’ve never let anyone do it before. In fact, the radiologist almost didn’t let Karen do it. He actually sounded annoid that Karen even wanted to atempt the feat and skeptical that she'd be able to finish. That is a really long time to lay motionless in a loud enclosed space. In the end all the scans took more than four hours. I don’t think many people could have done so well in this unusual MRI marathon. To lay motionless for that long is more like something you’d have to do to become a Samurai warrior or Army Ranger sniper, not when you are a 5 foot 4 inch mother of three.

After the MRI was over I took Karen to Kincaid’s. This is the restaurant where I first told Karen I loved her, and we’ve shared a number of other great moment’s there since then. It’s located in Jack London Square (Oakland) and sits right on the water over looking the Marina.

As I sat across from Karen sharing a quiet moment and a glass of a refreshing California Riesling, I was trying to synthesize all the thoughts and feelings that kept popping in and out of my mind. For a while all I could really focus on was her striking blue eyes. That, by the way, was one of her features that I remember thinking a lot about the first few years we were getting to know each other.

Finally it dawned on me what the idea was around the edge of which my thoughts had been flirting. It wasn’t a totally new thought to me. In fact it was an idea that I’ve considered a number of times before. But the truth of the idea stood out more starkly and clearly than when the thought had come to me in the past (this often seems to be the case when the same idea is seen in the light of a new experience).

I realized afresh how different I am after being married to Karen for 8 years and how different my life is today because I chose to marry her and not someone else. To a significant extent I am the man that I am today because Karen is my wife. God has used her as the biggest and most important instrument in my life to sharpen and mold me. I am very thankful for the life that I have been given and Karen is responsible for much of the life I am now enjoy. I shudder to think what my life would be like were she not a part of it.

In Genesis we are told that God made Eve to be a helper suitable for Adam. She was to fit him perfectly in his calling to subdue the earth to the Glory of God. It is not enough to realize that women are suitable for men in a general sense. It is also central that we realize that each particular wife, given to a particular man, has been given because she is specially suited for him, to be a helper in his God given calling. Not only has Karen been a great help to me in terms of my secular vocation, God has used her in my life to mold and shape me as a person, so that I am more effective in all of the callings God has placed before me. I look different, talk different, listen differently, think about things differently, have different priorities and in so many other ways am different than I would have been had I married another woman. She fits me perfectly, better than a hand and glove, because unlike a glove she makes my hand so much stronger, more efficient, more tender ...

Because of Karen I have learned how to be decisive, I’ve come to appreciate that the small things are actually big things, she’s shown me what it looks like to passionately desire God to remold us into the image of Christ, I’ve been privileged to observe first hand what it looks like to live a lifestyle characterized by endurance, I’ve seen and received by association the blessing that accompanies a good reputation and I know what it feels like to walk into a room and feel honored to be seen with someone truly special.

It also says something about Karen that for the most part the changes God has wrought in me through her occurred not because she’s talked a lot about them, but because I have seen these attributes modeled in her life. I could write for quite some time listing the many things that I have learned from Karen and I know that there are many more ways she has effected me that I am not even aware of yet.

One of the reasons I look forward to growing old with her is that I am confident God will show me many of the other numerous other ways that God has already shaped me through her. Though a residue of vanity in me groans when I imagine the wrinkles, back problems and various invasive and undignified probing that accompanies growing old, I am in the last analysis really looking forward to getting old and saggy with her. I know that each day that I am blessed to fall asleep beside her, that is a day that I am made a better man because of my time with her.

Wednesday, October 11, 2006

"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. "
Philippians 1:3-6

Here's a picture that Chris and Wanda Kersey graciously took two days ago. You can see how great she looks!


Karen and I continue to be overwhelmed by the unending cascade of generosity that you continue to shower on us. It is truly hard to articulate how utterly thankful we are for everything that each of you has done for us. Thus we are left on the horns of a dilemma.

On the one hand, all the words we come up with aside from “Thank you” risk sounding trite or insincere. And yet on the other hand a simple “Thank you” seems to run the risk of sounding weak and obligatory.

As we approach the one month mark since we first rushed Karen to the ER, please know how much we continue to covet your prayers and appreciate your generosity.

Here are some current updates on Karen:

We have our next two appointments scheduled and approaching fast. Karen will be going to get her post operative MRI next Friday the 20th. She'll actually be getting 4 MRIs. One of her head, and three of her spine. She’ll be in that machine for about four hours with a couple of “stretch breaks” in between each scan as they change the "coil" (whatever that is). These people talk to you like everyone speaks the same techno-babble that falls from their lips.

The following Thursday we'll be going back to UCSF to have an interview with the radiation oncologist. They'll use the MRI results from the week before to determine their suggested course of radiation treatment. Our nuero oncologist will also look at Karen's spine to determine if the ependymoma has traveled to her spine through the cerebral fluid. This is rare but happens occasionally. During this meeting we'll be able to ask the radiation oncologist all the specific questions we'd like about the radiation therapy itself.

Also, Karen’s been experiencing pain in her thigh and back muscles. We were wondering what the cause of this might be but our oncologist and pharmacologist were stumped. After about 2 minutes on Google, however, my sister in law found a great article on the side effects of the steroid that Karen is taking. Apparently this medication (among its many side effects) causes a depletion of potassium which in turn can cause cramping and muscle pain, ergo … she’s eating bananas. Anyone know what the side effects of bananas are? On second thought I’d rather be ignorant on that subject.

We’re thankful that Karen’s last day taking the steroids will be on Saturday.

Saturday, October 07, 2006

As I glance over at Karen throughout the day I can't help but smile as I consider all that God has been doing over the past few weeks.

  • Karen could have died that Thursday afternoon that I found her unconscious on the floor ... but God preserved her
  • The tumor could have been inoperative ... but we were blessed to have been provided with a skilled surgeon
  • She could have had a stroke after the surgery ... but she came through perfectly
  • The tumor was supposed to be terminal ... but it turns out they were wrong
  • She wasn't supposed to be able to talk after the surgery ... but she sang and played the piano at a wedding last night

One of the Psalms that she sang last night was Psalm 128A. The words to the last stanza of that song are:
"And may you see Jerusalem's good all days on earth you dwell. May you your
children's children see, and peace on Israel."

Because the prospect of Karen actually seeing her children’s children had been so poor only a few days before, the great news we received on Tuesday made the blessing that accompanies seeing your grandchildren a truly sweet picture. Coming out of the meeting, however, it wasn’t this picture that was on Karen’s mind.

As I’ve said before Karen is currently at a real disadvantage. It often feels to her like everyone around her has a better understanding of what’s happening than she does. Trying to wrap her mind around this whole situation has been like trying to envision what you look like without the benefit of a mirror to help. You have to rely on everyone else’s description of reality and thus the details in your mental picture remain fuzzy.

So, I’ve been trying my best to help nudge her along as we all endeavor to come to terms with what this all means. In part this has taken the form of summarizing what the doctors are saying and what each bit of information means for her future.

Karen didn’t need my nudging on Tuesday, though. As we sat in the car and began preparing to drive home she told me that she was finally beginning to understand that this cancer was something that she’d have to live with the rest of her life. Silly as it might sound, until this last appointment she had imagined that after the radiation she could simply put this chapter of her life behind her and move on … cancer free. She never even considered that she’d have to get periodic scans, or the possibility of recurrence.

I was glad that she was coming to terms with the long term consequences of her cancer but I also wanted to make sure that after such a positive meeting her focus was in the proper place. I didn’t want her focus to be on radiation or MRIs or recurrence etc. Instead I wanted her to focus on what Dr. Prados kept repeating in our meeting, that Karen should plan on a long and happy life.

I struggled to summarize this message in a way that would create a clear mental picture on which she could set her mind’s eye. After a few moments it finally struck me and I told her gently, “Karen . . . You can plan on seeing your grandchildren.”

A smile of contentment spread across her face. The tears of peace that welled up in her eyes told me clearly that all the inconveniences that might accompany her cancer really don’t matter in comparison with the great joy she will experience when she sees on the face of our first grandchild the special smile that grandchildren reserve only for their grandmother’s.

Wednesday, October 04, 2006

I thought you all might be interested in seeing a before and after MRI scan:


The left image is before the surgery and the right image is after the surgery. You can think of the image as if it were taken by a camera near Karen's feet looking up through the bottom of her brain. The mass was about 5 centimeters in diameter.

The right arrow points to the white object which for the most part represents the tumor.
The left arrow is pointing to the left ventricle. The ventricles are the dark areas in the middle of the brain. There is one on each side of the brain and they should be symmetrical. As you can see from the left image the ventricle on the right side is being compressed.

After the surgery the ventricles were more symmetrical after the pressure had been released and it's pretty obvious that a lot of that tumor had been removed.

You can also see in the picture on the right the swelling that took place after the surgery on the side of her head.

Tuesday, October 03, 2006

Dear Family and Friends,

I do apologize that it has taken me until now to get this update out there. I tried last night but fell asleep and tried today but work got in the way. So here are some of the most important bits of info we learned during our meeting with the oncologist last night. If you all have additional questions please let me know.

Dr. Prados confirmed that Karen's tumor (funny to call it "Karen's tumor" like it's a piece of clothing or a good idea) is indeed a Tanacytic Ependymoma. As the doctor said, it's never good to have a tumor, but if you do get one this is the kind you want to get. This is considered a low grade (grade 2) cancer, slow growing and typically responds extremely well to radiation therapy.

It is also a rare kind of tumor. For some perspective Dr. Prados told us that UCSF is one of a handful of "tumor centers" in the nation so they see a lot of tumors in a year. In fact UCSF sees a total of 3 or 4 tumor patients a DAY but they will only see about 15 to 20 ependymoma cases in an entire YEAR. Only about 150-200 cases of ependymoma occur across the nation in an entire year.

Aside from this being a relatively uncommon tumor he could say that the majority of adults (85-90%) with an ependymoma have "long term success." He gave an example of an ependymoma patient that he treatedwhen he first came to UCSF in 1985 who he just saw recently and who continues to do very well. That’s 20 years later and still no problems.

Also, let me give you a sense for what he means when he says it is “slow growing.” If the tumor was left alone and they didn’t do anything to it, it might be three or more years before any growth was even detected in scans or by symptoms. In fact, the accepted practice for ependymoma patients for whom they believe they have removed all of the tumor is that they don’t even recommend radiation therapy at all.

Even in Karen’s case where they know they didn’t get all of the tumor, they said there is no urgency to starting the radiation therapy. The reason for this is that there is no known difference in outcome between those patients who do radiation right after surgery and those who wait until scans or symptoms indicate significant growth. In terms of our options, the doctor said the choice is up to us, and that the only real question for radiation has to do with the timing of when we begin.

Some of you may be asking why one would want to wait to do radiation. The reason has to do with the effects of radiation on the brain. Although they are recommending a very low level course of radiation that will be focused specifically on the area of the tumor, the radiation can still have an effect on the abilities controlled by that part of the brain.

The short term effects of radiation are typically fatigue, as well as dry skin and possible hair loss at the spot that is experiencing the radiation. But this will go away after the radiation is done. The long term effects, however, could be subtle effects on short term memory. This is due entirely to the fact that the part of her brain where the tumor still resides is the area that facilitates memory. If the radiation did effect her memory it would manifest itself in things like difficulty remembering a new name. He said it would probably not be noticeable to anyone else, and that “she might have to rely a bit more heavily on her blackberry.” All in all even the worst case scenario regarding side effects would be nothing more than an inconvenience easily overcome.

Important to note is that he also said that if she did experience some subtle deficits in memory that this would not be something that she would get back. Damage like that to the brain doesn’t heal. This is the reason to wait for radiation. In waiting you put off these potential problems a year or two more. So Karen and I will have to weigh the options and make a decision, do it now and get it over with or do it later and put off the potential inconveniences. I’ll give you one guess which way Karen is leaning …

Many of the questions that you all asked had to do with radiation. It turns out that though Doctor Prados is an expert Neuro Oncologist, we really need to address most of those questions to the Neuro Radiologist. We’ll be doing that when we meet with them.

Some of you also asked about how much of the tumor was left in Karen's brain. Well, there is no precise answer on this. The reasons for the imprecision are numerous. Some of the reasons include the inability to exactly distinguish where the tumor begins and ends. Also, the MRI, though very good, just doesn’t provide the level of detail necessary to find the edges even if they did exist. In answer to this question, Dr. Prados said that most surgeons would have gone in and only done a biopsy. Our surgeon, Dr. Parsa, was one of few nuero surgeons who could have resected anything, let alone the significant amount that he ended up removing. The take home message on this … we got the best results you could possibly hope for in this situation and the rest should be controlled by radiation.

In the next few weeks Karen will be getting an MRI of her head and spine. At that time the swelling and other effects of the surgery should have gone away so they can get a good look at her brain as well as her spine. They are checking her spine because this kind of tumor can sometimes travel through the cerebral fluids down into the spinal cord. The MRI will help to determine if this has happened, though there are no indications that we ought to really be concerned about this.


On another note, I did ask about the genetic nature of ependymomas and whether we should be concerned about our children or Karen’s brother getting this disease. Dr. Prados said that the factors that need to be present in order for this to be a realistic concern do not exist in our case and that no risk exists of transmission.

In terms of lifestyle issues here are some of the things that Karen can and cannot do:

She CAN

  • Walk
  • Be left alone
  • Bend over
  • Drink alcohol in moderation
  • Do pretty much anything that she want’s to as long as it doesn’t hurt

She CANNOT

  • Drive for the next 6 months (legally because she had what may have been a seizure)
  • Jog until her head no longer hurts (about 2 weeks more)


Her our the Next Steps:

  1. Karen will be getting an MRI of her head and Spine in about 2 weeks
  2. We’ll meet with the UCSF radiologists regarding radiation therapy
  3. We’ll determine when to start radiation
  4. We’ll get recommendations from UCSF as to what radiation centers they would recommend in our area.

I hope that this satisfies some of your curiosity. Like I said in the beginning, let me know if you have any other questions at this point.

Monday, October 02, 2006

Questions ...

As we prepare for tomorrow's meeting with the oncologist I thought it might be interesting to see if any of you have questions you think we should ask the oncologist.

I won't be responding to these questions on the blog, but I thought you might have insites that could help us in our meeting tomorrow. Feel free to post the questions and we'll use the ones we find the most appropriate for the meeting.

Sunday, October 01, 2006

I know it has been a few days since I have posted. I suspected this would happen. For those who may have been impatiently waiting for an update I do apologize.

The good news is that my lack of posting is a good sign. It means no major changes have occurred and that life is settling into a generally comfortable routine. Karen continues to improve everyday. We measure this by the number of pills she has to take at each meal. She’s down from 25 pills a day to 11. She did tell me tonight, though, that unlike the fast, pit-stop kind of healing that she is used to, this time the healing is "going really slowly." I don’t mind slow. If that philosophy worked for the turtle why shouldn’t it work for Karen.

Since she got her staples out on Tuesday the incision has continued to improve. The redness is basically gone, and it is starting to take on a more normal appearance. She wore her hair down today for church and you couldn't tell she had any incision except for about an inch near the beginning of the incision on the top side of her head. You wouldn’t have even noticed that unless you really looked. You can ask anyone who saw her at church today and they'll tell you that she looked great! Considering her condition 14 days ago I continue to be amazed at the healing God has provided.

In fact, today was a really wonderful Sunday. Karen was able to make it through the whole day and whereas last week she had a hard time grasping the content of the sermon, this week her comprehension was a lot better. Pastor Walker preached from Acts 12 on prayer. Given the events that spawned this blog, prayer and its importance in the life of a Christian has taken on a much more vivid reality than ever before.

It really has been a blessing to watch our God, who at the same time he’s busy upholding each molecule in the universe, take the time to bend his ear to the supplication of his saints and touch Karen’s mind and body in answer to your cries on her behalf.

Wednesday, September 27, 2006

Proverbs 16:33 "The lot is cast into the lap, but its every decision is from the Lord."

I'm beginning to notice that Karen is definitely more tired toward the afternoon and early evening. I know that many of you are slapping your forehead and saying "duh! What else would he expect to see after major surgery", but I have always admitted that I am slow on the uptake when it comes to things like this. For Pete's sake, when we were dating Karen had to tell me THREE TIMES that there was no future for our relationship before I finally understood. Fortunately she was wrong :) but the point is still the same. I often need the obvious to be hammered into my head a few times before I see how obvious it really is.

Aside from the fatigue, however, Karen is doing remarkably well. She was noticeably more energetic this morning and when my Mom called she commented that it sounded like the old Karen.

I am also pleased to announce that Karen has now reached a real milestone in her growth as a patient. She actually passed up a fun opportunity this afternoon realizing (without help) that it might be a bit much for her at this point. Usual she only acquiesces after receiving a volley of "No" missiles from me and any other family and friends in the vicinity. This was momentous for her because it is the first time I can recall that I've heard her admit without "help" that she might need to rest. For Karen this is an epiphany of the 1st degree. When I heard her turn down the opportunity my jaw dropped, my eyebrows raised in astonishment, and for a moment I may have glimpsed a cartoon 'thought cloud' form above her head announcing that she finally realized that when you have brain surgery you really should slow down a bit.

As Karen continues to improve I've also been thinking over the past few days about the whole idea of odds and percentages. I'd like to think I am pretty tenacious in my pursuit of consistency. Whether it is in the context of politics, theology, or beer, I like to think that I'll be consistent in how I apply arguments, even to the point of having to make uncomfortable changes in beliefs or behaviors.

So as I was reflecting on the hurricane of emotions that was last week, I am pressed to apply my argument about odds and percentages consistently. As you may recall, I was significantly impacted by an article by John Piper called "Don't waste your cancer". For those of you who are interested you can read it here. (I'd encourage everyone to take a look. It's short but powerful).

In this article John Piper talks about the ten ways that a Christian can waste his cancer. In particular the third point struck me to the core. I think it had such a poignant impact because at that moment I was battling with the words of the surgeon after he had come down to talk about what he'd discovered during surgery. The words

"98% fatal ... Terminal ... 98% fatal ... Terminal ... 98% fatal ... Terminal ... 98% fatal ... Terminal ... 98% fatal ... Terminal ..."

kept pressing in on me. I knew that God could heal Karen but I also knew that these percentages were not pulled out of thin air. They were real and I had to come to terms with the reality of the situation.

When I read the following words, however, it was like a kick to my rear (uncomfortable but effective) ...

3. You will waste your cancer if you seek comfort from your odds rather than from God.


The design of God in your cancer is not to train you in the rationalistic, human calculation of odds. The world gets comfort from their odds. Not Christians. Some count their chariots (percentages of survival) and some count their horses (side effects of treatment), but we trust in the name of the LORD our God (Psalm 20:7). God’s design is clear from 2 Corinthians 1:9, “We felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.” The aim of God in your cancer (among a thousand other good things) is to knock props out from under our hearts so that we rely utterly on him.


I realized even before reading this that God is not bound by odds. He messes with the so called experts all the time and leaves them scratching their heads wondering what part of their calculous went wrong. But somehow the way Piper communicated this truth at that moment really provided me with a peace that carried me through until we got the news the next Thursday that Karen's cancer was not what they expected in the beginning. Her chances were now extremely good.

NOW FOR THE MOMENT OF CONSISTENCY

If I was not to put my hope in odds when it was 98 to 2 against Karen, should I now be putting my hope in odds when they are suddenly reversed in her favor? I'll admit that the good news did lift an enormous burden from my back and I finally felt myself breathing again. Nevertheless, at the moment the good news was delivered did I slip back into the trap of trusting in my odds rather than our Heavenly Father who seems to really get a kick out of frusterating the odds? I think I did to some extent.

Don't get me wrong. I am thankful for the new and promising prognosis. This is surely an answer to prayer. But I am reminded that I am required by the 9th commandment to be consistent in my thinking and more importantly to be consistent in my fidelity to Christ. My physical life remains in his hand, my spirtual life still rests in his finished work on the cross. Were do the odds come in then? I guess 'Odd' in this situation really should only be used to describe Karen's husband, and not her chances of survival. I'll leave Karens' future in bigger and beter hands than mine.

Tuesday, September 26, 2006

A number of people have asked that we post a picture of our whole family. Funny thing is ... after searching high and low I was not able to find many pictures with all of us. I did find one, however, that we took when we were on our trip to Oregon.



I'll give a special prize to anyone who can tell me what device is pictured in the background (residents of Redmond, OR are not eligible).

Karen got her staples out today. All 51 of them. For those of you who are interested it was painless. Karen said it just felt like someone was tugging on her hair. We had our regular family doctor do the removal around the corner.

The devise to the right is the staple remover. For those of you who would like one of your own you can purchase one for $8.80 or a box of ten for the low low price of $61.90.

Next Tuesday the 3rd we have an appointment with our Neuro Oncologist. He'll have the final pathology report back then and will use that to determine their suggested course of treatment. He's already said that for Ependymoma's they usually just suggest a 6 week course of radiation therapy.

We continue to value your prayers. Though the diagnosis and prognosis appears optimistic at this point, the road of recovery certainly is not over. Thank you for your faithfulness in lifting Karen up to our Heavenly Father.


Matthew 7:-11
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts
to your children, how much more will your Father in heaven give good gifts to those who ask him!

Sunday, September 24, 2006

We're at home now with Karen's parents (Gordon and Mary) enjoying a beautiful Livermore Sabbath's rest. Worship was wonderful. I was struck particualrly by the words of one of the Hymns ...


Great things He hath taught us great things He hath done
And great our rejoicing through Jesus the Son
But purer and higher and greater will be
Our wonder our transport when Jesus we see

It always bother's me when I notice how frequently the focus of my praise centers on all that God has DONE for me rather than all that he IS. He'd be worthy of praise even if he'd never done one thing for me. Don't get me wrong, though, I am thankful that he saw fit to extend his love in my direction. I am also thankful that the outlook for Karen is now so good. I just know that to a great extent my praise can be so self centered and fair weather.

I liked the words of this song because it starts out by recognizing God has done great things, but it ends where it ought to, in recognizing that ultimately our joy will simply be in seeing Christ face to face on the day he calls us home.

Great things He has Done!!!

Dave

Saturday, September 23, 2006

The kid's are on their way back home. Kevin (Karen's brother) and Tacy have been so great during this whole time. In fact it has been truly amazing the way all of our friends and family have been so helpful and supportive. Thank you all!



Proverbs 17:17
A friend loves at all times, and a brother is born for adversity.

Proverbs 18:24
A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.

We are really looking forward to the kids being home. Josh has a soccer game today and KP (Karen) really wanted him home so he could play his vital role as nose picker and space cadet.

I am very interested in how they will do today. The first game was a slaughter (we lost), the second game they only lost by two, and last Saturday they tied! I like the trajectory :)
GO BULLDOGS!!!

If extrapolation were appropriate in this situation I'd be confident Josh would bring home a win today, however, we're talking about six year olds here. Oh yeah, and we're not supposed to be keeping score.

On another note ...

Karen and I are really looking forward to worship tomorrow with our church family. There is nothing quite like worshipping corporately with the people of God. I love to hear the voices of God's people raised in joyful song. What a day it will be when there will be nothing separating us from Him, not time, or distance, or distraction, or this body of sin, just pure unobstructed adoration amidst a countless throng of saints.

Revelation 7:9-12

After this I looked and there before me was a great multitude that no one could count, from every nation, tribe, people and language, standing before the throne and in front of the Lamb. They were wearing white robes and were holding palm branches in their hands.

And they cried out in a loud voice: "Salvation belongs to our God, who sits on the throne, and to the Lamb."

All the angels were standing around the throne and around the elders and the four living creatures. They fell down on their faces before the throne and worshiped God,

saying: "Amen! Praise and glory and wisdom and thanks and honor and power and strength be to our God for ever and ever. Amen!"
I guess each Lord's Day is something of a rehearsal for that great day. I hope that you all will be joining with us tomorrow, wherever you are in the world, as we ready our voices for eternity.

Friday, September 22, 2006

Here's an update from our Pastor regarding our fellow church member Bob Gibson ...

We wanted to update all of you regarding Bob’s surgery so that you know how to continue praying for him and for Jane. Bob ended up having to have a quadruple, not a triple bypass. He’s out of surgery now and doing “well”. He’ll be in ICU for 2 ½ days, Lord willing, and in a regular hospital room until Thursday. Jane is weary, but relieved that the surgery went smoothly. Keep praying for them as Bob begins the lengthy recovery process!
I have a new prayer request for you all. Some friends of ours from our new church just found out a few days ago that he needs a triple bypass. He is actually in surgery right now.

I am excited that I have the opportunity to share this with you because I know you are faithful in your prayer. Please lift Bob Gibson and his wife Jane up in prayer.

Dave
I am amazed at God's faithfulness. Karen woke up this morning and for the first time since surgery had oomph in her voice. It's is wonderful to hear energy back in her voice. I have so much to be thankful for. God has been gracious and given us the desire and hope of our hearts.

I was thinking about the idea of hope yesterday. It's a very prevalent theme in conversations from doctor's, friends and anyone else you come into contact with in these situations.

"You have to have hope." We are told and say to ourselves. It does seem, in fact, to be the cardinal and unforgivable sin in situations like these to take hope from the one suffering.

That got me thinking, however, about what we mean when we say this. (We so often say things without thinking through what we mean). Hope, after all (like trust or faith) is only as good as the object in which it is placed.

I am convinced that there is such a thing as vain hope. This is an empty hope. Hope for hope's sake. Or hope in something that is really not powerful enough to do any good at all (our own goodness, our inner strength, the skill of doctors, the love of those around us). Even hope in a good outcome is no place in which to put our hope. After all, none of us are promised tomorrow.

This is not the kind of hope that Karen and I have been given over the past week. By God's grace our hope has been placed in an object more solid and immovable than the universe itself. The Rock of our salvation, Jesus Christ.

As I looked in scripture at the whole idea of hope I was struck by how consistently we are shown that the key to hope is placing it in the hands of our redeeming God. Take a look at just a few of the verses that show us in whom we ought to place our trust ...

Psalms 31:24 Be strong and take heart, all you who hope in the Lord.

Psalms 33:18 But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love,

Psalms 33:20 We wait in hope for the Lord; he is our help and our shield.

Psalms 130:5 I wait for the Lord, my soul waits, and in his word I put my hope.

Psalms 130:7 O Israel, put your hope in the Lord, for with the Lord is unfailing love and with him is full redemption.

Psalms 147:11 the Lord delights in those who fear him, who put their hope in his unfailing love.

Isaiah 49:23 Kings will be your foster fathers, and their queens your nursing mothers. They will bow down before you with their faces to the ground; they will lick the dust at your feet. Then you will know that I am the Lord; those who hope in me will not be disappointed."

Jeremiah 14:22 Do any of the worthless idols of the nations bring rain? Do the skies themselves send down showers? No, it is you, O Lord our God. Therefore our hope is in you, for you are the one who does all this.

Jeremiah 17:13 O Lord, the hope of Israel, all who forsake you will be put to shame. Those who turn away from you will be written in the dust because they have forsaken the Lord, the spring of living water.

Lamentations 3:25 The Lord is good to those whose hope is in him, to the one who seeks him;

Micah 7:7 But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me.

1Peter 1:3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead,

1Peter 3:15 But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect,

I thank God that because of his grace toward us, Karen and I know in whom our hope is found. I pray that from now on, if you have not done so before, you will all think carefully when you use the word hope and will ask yourself in what object that hope is placed.

Thursday, September 21, 2006

Great News!

We got a call from our NeuroOncologist a few minutes ago and he informed us that they believe the tumor to be a very rare variant of an "ependymoma." This would be a class 2 tumor rather than the very aggressive class 3 or 4 that they were expecting to find.

These tumors are very receptive to radiation and the prognosis is good. No Chemo therapy should be needed.

I'll fill you in on more details shortly but wanted to get the good news out right away. We have a lot to be thankful for tonight!

Dave
Karen Just played the piano and we sang some Psalms together. It was really nice to hear her voice and see her fingers gliding across the keys. Here's the words to one of the songs that we sang in preparation for the Brown/Bush wedding ...

How blessed all who fear the Lord and walk within his ways. You'll eat your labor's fruit be blessed, and prosper in your days.

Your wife will as a fruitful vine within your house be found; Your children will as olive plants your table gather round.

Behold thus shall the man be blessed who truly fears the Lord! The Lord from Zion grant to you His blessing and reward.

And may you see Jerusalem's good all days on earth you dwell. May you your children's children see and peace on Israel.

Wednesday, September 20, 2006

This is a very strange process. You never really know when the gravity of this situation has actually sunk in. I've been trying to assess where Karen is at in terms of her really understanding her condition. While we were on a walk earlier she told me, without my prompting, that she doesn't think she really gets it yet. I think she's right. She has not had as much time as we have had to really let this all sink in. She has not allowed herself to think to far into the future yet, which is fine for now. "Baby steps" as I was told once by a goldfish wearing hypochondriac.

I do worry about Karen and how she will handle the full weight of her new reality as it sinks in. Maybe the epiphany will come tomorrow when we hear the results of the pathology and get a prognosis. She is strong, stubborn, (her faith is much stronger than mine) and I know she will process the information just fine. But I also hate to see her scared and hurting.

In the past I have often said what a comfort it is to look back at our own lives as Christians and to see the many troubles and times of uncertainty that God has brought us through. The path that God has cut for each of us through history is fraught with these hills and valley's and we never in our wildest dreams would have written the story line God has penned for us. But what a drab uninteresting and lifeless story our lives would be if we were the ones writing it.

Then I think of the history of God's people through the ages. I think of the Israelites as they were being delivered from Egypt and how quickly they turned their backs on the God who had just saved them. Yet God was gracious and demonstrated his mercy and let them drink from the rock. I think of the church in Corinth in the 1st century and the way they had so quickly fallen into sin. Yet by the second letter Paul wrote to them God had proved faithful to forgive and bless them once again.

Karen's life, and the lives of all the saints through history are a testimony to the beauty of the story of redemption that God has been weaving since the first day He made His promise to send one who would crush the head of the serpent.

Clearly, the symphony of Karen's life has entered a movement with a distinct minor key, but as long as we are driven to Christ by these minor chords then her pain, and ours as those who love her, will not be wasted.
Karen is getting better each day. She woke up this morning asking for pain killers though, because she slept great but that meant she didn't take any pain meds in the middle of the night.

She's feeling better now, had her 'Kicks' (apparently not just for kids), her morning cup of coffee, and paid our quarterly tax bills. That might sound to you like an odd combination of stuff but is quite normal for Karen.

Tomorrow is the "Tumor Board". This is where about 25 experts on brain tumors sit around all day and review a few tumor cases. They'll look at Karen's scans, review the pathology of the cancer, and assess which forms of treatment will be best given the specifics of Karen's situation. Please pray for good results from Pathology and great options for treatment.

We'll we're about to watch the second season of 'Lost'. I know, I know, but it's not our fault. Mike and Michelle (Brother and Sis'n'Law) got us hooked when they gave us the first season on DVD. You know how it is. In times of crisis like this you find out what is really important to people :) I'll let you know what happens to Walt.

Dave

Tuesday, September 19, 2006

We're home!

I am currently sitting next to Karen and Michelle on the couch while Karen crunches an apple in my ear. 5 days ago this probably would have irritated me. Actually I'm sure it would have irritated me. After the past few days it now sounds like a chorus of angels. (Michelle's crunching on the other hand still irritates me).

I am finally able to show Karen the blog first hand and she is really overwhelmed and touched at your outpouring of love and expressions of sympathy.

Karen has given me permission to post a picture of how she is looking, but it may be a day or so before I do.

Thanks again to everyone. The next big news will come on Thursday or Friday when we find out exactly what kind of cancer it is and then begin to develop a treatment plan.

I'll be talking to you all again soon (probably later tonight).

Dave

Monday, September 18, 2006

Just a quick post before I go to bed. This should be our last night here at the hospital. Karen has been up and walking. Actually doing laps around the building. Don't get the wrong impression, she's not going very fast but she is walking. I accompanied her on one of those walks around the 8th floor hand in hand. I can't tell you how special I felt walking through the halls with my bride on my arm. I felt like the way I did as we walked down the aisle on our wedding day after being pronounced "man and wife." I knew she was gorgeous then and I felt the same way tonight. The goofy look on my face was a testament to that fact.

If I step back and analyze my feelings for a moment one part of me says that I am blinded by love, but the rest of me knows how cute she looks with those silly pigtails they gave her before surgery.

For those who haven't seend her yet she has little pig tails randomly placed all over her head with rubber bands. Probably the best description I could give you to help you build a mental picture is that it looks like my spazzy two year old daughter Sophie somehow got ahold of a bag of rubber bands and absolutely went to town on Mommies hair with the help of that WWF wrestler from the 80s that adorned himself with those useful little office supplies. She really is cute.

Surgeons do a great job on brains, not so much on hair.

Maybe I'll sneak a picture and post it later ... I may need to slip a few more vicadin into her tapioca for that to happen.

Dave

P.S. I know she is getting back to normal because as she was walking with me around the floor she looked up tenderly into my eyes ready to whisper what I can only assume would have been some confession of abiding love for me when she promptly walked straight into the corner of a wall. I was obviously concerned considering she just had brain surgery and her skull is currently held together with staples. So I asked her if she was OK and she said without missing a step "Yeah, it would have happened on any normal night at home.'

It's good to have her back :)