MD Anderson - Part Deux (two)

We were supposed to go to MD Anderson this past week for a report on my CT scan. The MD Anderson CT machine has much better resolution than the Austin-based one. This is strange to me, given how new the Austin one seemed. But I will say that the MDA one has prettier lights, they spin faster, and the voice that tells you to "Take a breath. Hold it. Breathe normally." is much more human-like. The one here in Austin would remind you of that little robot in Buck Rogers from the late seventies. He only said like three things though: "Good idea, Buck." "Beedee beedee beedee." and "Look out, Buck." He was not as sophisticated as the CT machine here in Austin.

Here is that little Buck Rogers robot with my other favorite character, Wilma Deering.

So as I was saying, we didn't get to go to MD Anderson this week, and so there is really nothing to report from a health point of view. The news is that we did hear from MDA and will be heading down there this week. We will be finished with additional testing late Thursday night, and heading back on Friday AM. We will look to update the blog with results on Friday or that weekend depending on how things go. 

Thank you for your thoughts, prayers and cheers. We thrive on your positive vibes. 

Juice

I am living on juice these days. It's healthy. It tastes soooo good. It's soooo convenient with the new locations in West Lake. And it's soooo cheap. 

But this isn't about juice. Juice is power. Power is love. Thank you for the power. Thank you for the juice.

The love, support and caring that have come bubbling up through the placid surface that is our social network is astonishing. Friends I have enjoyed over the years as laughing beer-b-que buddies are showing up now with those same jokes and same smiles, but also with food.

It has been astonishing to see the number of people who have shown us love and caring these past few days. The notes and emails come daily. They are sincere and lovely and literally fill my energy bar with juice. I feel better having read them. Thank you for the notes. Thank you for the thoughts. Thank you for the prayers. Keep writing and praying or pausing to think of us. If the tables were to someday turn, I know my family would be there for you.

I have learned about ActionLove this week. It's when you put action behind your words of support. That action is everything from bringing a kid home to saying a prayer or thinking of us and letting us know. It's a simple text with a snapshot or a note when you have a minute.  

I hope that one day, for reasons other than cancer, I have a chance to ActionLove others. It's a wonderful skill and takes all forms--a note, a prayer at a stop-light, a text, or a friend, standing in the door with one of your precious kids after a play date or holding a juice with your name on it.

Thank you to all our friends. 

p.s. This isn't a request for juice in the literal sense. I have more than I could ever drink right here.

Shout out to MDJ. In it to win it.

Deb's take on MD Anderson - posted here http://wdcwb-family.blogspot.com/

Wade and I went to MD Anderson yesterday to meet with an oncologist  named Dr. Milind Javle who has a deep understanding of bile duct cancer.  He was very knowledgable and helped us understand better what we are facing. 

Wade's diagnosis of bile duct cancer was confirmed by Dr. Javle.  The type of tumor he has is called a Klatskins tumor and due to its complex nature, it often cannot be successfully biopsied.  It is one of the few cancers that is treated without a definitive diagnosis through a biopsy. 

They performed another CT Scan after our meeting with Dr. Javle so they can see more clearly the exact location of the tumor to determine the best treatment plan.  The scans at MD Anderson provide better detail than the scans we had done in Austin so this additional test will be extremely important.

Just like the doctors in Austin, Dr. Javle doesn't believe that the tumor is resectable (meaning it cannot be cut out) due to its location between the bile duct branches and blood vessels inside the liver.  It is close to important arteries and therefore removing it is too risky.  Since it cannot be removed, the best line of defense is to do a combination of chemo and radiation for 5 - 6 weeks.  He will then take a break from treatment to heal while they take more scans to see how he is responding.  Dr. Javle is going to meet with a team of oncologists and surgeons on Tuesday to discuss Wade's case and put together a successful plan forward.

The good news is that if they recommend the chemo / radiation approach, the treatment can be done in Austin and the chemo is in the form of a pill.  The radiation is daily but only takes 10 minutes a pop.  We'll learn more about this next week.  We are coming back to MD Anderson next Thursday to hear the team's final recommendation. 

As you can imagine, this was not the way we expected to end the summer and start the new school year.  We are still in a bit of shock.  I will tell you though, Wade is amazing.  He has faced all of this distressing news, unpleasant abdominal surgical procedures, hospital stays, multiple CT Scans and bloodwork with such bravery.  I knew he was a courageous person before last week but now I'm in awe.  Thank God for his sense of humor…he keeps us laughing and moving forward. 

Feel free to send him a message of support.  He has really appreciated all of your love and concern this past week.  His email is wgillham@gmail.com. 

Finally, thank you to all our friends and family that have dropped everything and helped take care of our family this past week.  We will be forever grateful for all you have done.  Cate, Will and Ben are doing well.  They are aware of Wade's situation and are ready to fight along side him.  Our family is a rock.

I'll leave you with a picture of the first thing we saw when we arrived at MD Anderson yesterday.  I liked this a lot…

MD Anderson and Houston – Wade’s thoughts

Everything is bigger, and worse, in Houston. No, that’s not fair. As Deb and I drove into the medical center that houses MD Anderson and other hospitals, we passed the cathedral where we were married and where Debra was christened “Debra, child of God”. The lawns all around are lush. The gardens look beautiful and well planned. The fountains cascade with crystal water. And the light rail (!!!!) runs quietly and swiftly past us on the tree-lined road. We will be returning to this place over the coming months to visit Dr. Milind Javle, a recognized national expert on bile duct cancer. I am so happy to have a beautiful environment to welcome us with museums and aquariums. We will find ways to make these visits about more than bile duct cancer.

(As an aside, I need a name for my bile duct cancer that gives it less respect. In doing some very limited research on the information super-highway, I discovered that it is quite a sarcastic little sob. Get this. Bile duct cancer is typically reserved for 1) ladies, 2) who are over 65, 3) live somewhat sedentary lives, 4) and are Asian. In case you don’t know, I am none of those. My little buddy is lodged in a young(ish), active(ish), healthy(ish), non-Asian(no -ish), man(no -ish). So what to call it? I am open to suggestions because my names for it thus far are not fit to print. For now, we’ll call it cockroach.)

So, cockroach, Deb and I visited Dr. Milind Javle yesterday here in beautiful Houston. I am so very grateful to the close loved ones who opened this door for us. Dr. Javle is among the Illuminati of cancer researchers. He is at the very top, and the pinnacle for bile duct cancer. It would be hard to think of a more qualified, knowledgeable doctor to counsel us. We would literally NEVER have gotten an appointment with him. But yesterday, he took extra rounds to come sit with Deb and me and answer our questions and share his knowledge with us. As we are finding with every passing hour, the generosity of our family and friends is beyond our ability to say thank you. But, Thank You.

The short form of our findings is that cockroach is living up to his character. He is not typically able to be sampled for tissue. So oncologists treat him with chemotherapy and radiation without ever actually getting a verified biopsy. This is a very rare tumor indeed for doctors, who are gun-shy from mal-practice threats, and yet shoot their patients with poison to kill something that may in fact not be what they think it is. Talk about liability. This is one reason that my Austin doctors were so hell-bent to get a sample. But the sad fact is that if they would have been successful, it might have jeopardized the scope of my treatments by allowing cockroach to spread within my liver and bile duct more effectively. We have yet to see if in fact cockroach was compromised or not, and therefore if my treatment options are still wide open. For another day and another set of keystrokes.

I won’t dwell on the discussion with Dr. Javle except to say that I am 1) not a lady, 2) not Asian, 3) not over 65, 4) not sedentary, and 5) ready to smash cockroach’s foul guts out on the floor.

One last moment of the day---After all the dust settled from CT scans and blood drawings and visits with experts, Debra and I went to Sparrow, a restaurant run by Monica Pope who is well-known in Houston. Debra worked for Monica as a young waitress back when I was in France and she was spending time in Houston prior to coming to see me, where I would strategically ask her to marry me. Debra and I had a beautiful dinner of avocados, scallops and snapper, with Monica’s special margaritas to soothe the day’s bumps and scrapes. The air was skin temperature. There were no mosquitos. There were no loud-talkers. And the company was delightful.

Deb at Sparrow. Yeoowza!

Wade at Sparrow. Drinking a Margie! Take that cockroach.

And there was a very funny dog named Fergus. Fergus is Irish, of course. He is literally the shape of a large loaf of bread with short legs and long, grey hair. He is exactly like Beau, my own dear friend, except with an Irish accent and fuzzy hair. Deb and I loved him.

Fergus at Sparrow, eating a free bone.

We finished the day with sleep, in a Heavenly Bed™ at the Westin Galleria, paid for by Papa and Gigi. We are so fortunate.

Telling Will and Ben

Will's new lacrosse helmet. I love it almost as much as he does. Ben is a little further down...

I am happy and feeling good today. Yesterday was a day of progress, as usual, and Deb and I knocked out a bunch of life's minutiae while spending time together too. Thank God for her work to keep us both busy.

And, so I don't forget, I got a wonderful CT scan using that hot dye that coursed through my vascular network like warm acid. It settled in my lower bowel … lovely to feel while I laid on a hard table with my arms held back above my head. "These things are necessary for me to get better." 

In the big machine, I pondered whether or not to go to MD Anderson before or after the endoscopic ultrasound. We are going before now since we are meeting Dr. Javle on Friday at 1 PM, the exact time we are supposed to get the endoscopic ultrasound. 

But the big news from yesterday is telling Will and Ben. 

Ben's new helmet and gear. 

We told Will first. He asked how long I would be sick the night before. I told him I would talk to him about it in the morning. We sat down in Deb's office, Cate joined, and we walked through the details we know. He was scared of losing me. So help me God, I will not be lost. 

Ben was next. He is so wonderfully trusting. He was scared too of losing me. In a way, part of the healing process is hearing that those closest to me are scared of losing me. That makes me feel special. 

We gave Ben and Will similar tools to the ones we gave Cate.

1) Dad is strong and mean, and cancer is going to be sad he ever came to visit.

2) Their trust and openness with us is what will make them and me better. Anything they feel is completely okay. There is no expectation that they must be "strong" for me. If they're worried, scared, angry, if they want to be with friends, if they want to hang alone in their rooms … whatever, it's all okay. 

3) He can ask himself if what he is doing is making him better. If not, move on.

4) God is supporting us, and them and they can always pray and talk to God.

5) They have a huge support network and anything they need is not far away at all.

Appointment w/ Dr. Fuller, August 20 -

Met with Dr. Fuller again today. He is the "easy-cowboy" doctor who does complicated cancer surgeries. He as a "good cop" to my other doctor. And today, again, he was as humble and approachable as previously. 

He confirmed the CT scan I had on August 19 was very good at imaging the tumor. It sits at the "bifurcation" of the bile duct into the liver, and surrounds the bile duct, the artery and the vein that all converge in that one spot. It's Dealer 21 twenty-one times in a row. It remains unresectable and unattainable for a biopsy. It's hiding and waiting. 

http://www.uchospitals.edu/images/nci/CDR0000659742.jpg


Dr. Fuller supported our ideas wholly to go to MD Anderson. He completely understood and supported the idea. We go on this Friday for five appointments. 

The Fantastic Flying Books of Mr. Morris Lessmore

August 18, 2014

We read The Fantastic Flying Books of Morris Lessmore last night. In the book, Morris has a diary in which he writes “of his joys and sorrows, of all he knew and everything he hoped for.” Surprisingly, I didn’t realize this would make me sad. It did, and I had to let Cate read some of the pages for me. It is a beautiful book as well, but somehow sad in its beauty rendered in black and white and sepia. Characters who read become color. Characters who lose reading or books become sepia or black and white.

After reading it, Will told me he lost his last tooth while at the Donnovan’s house. It was his left incisor. He brought it to me and I held it and was sad. The night ended with general peace after talking about how my sadness is partly due to my inability to focus on a diagnosis with determination. It makes me fumble along without direction as I vacillate between sadness, numbness, and anger. Cate was wonderful for me, talking through this intense emotion and supporting me through it.

Telling Cate - 8 Things to Remember

We told Cate tonight. She was so strong. Sad, sad, sad, but so strong. We wanted to tell her so that if she heard from another source, she would not be surprised. 

We told her the following list of things to keep in mind:

1) her daddy is mean when he needs to be and is going to fight this sob.
2) we have the means to pay for the right medicine
3) we have the network to open doors in MDA (Mac’s friend on the board and Karen’s friend, Dr. Blum, who funds this type of research, and Robyn’s friend Doug Ulman who runs LiveSTRONG)
4) we have all the best doctors, and access to even more
5) we have puppies to help us fight, and to soothe us when we need it – this is so important to me on so many levels
6) we have each other and we can talk to one another and support each other to be free, sad, scared, angry, worried, quiet, funny--whatever we need
7) we have God on our side, and we can talk to him when we need to
8) we have music to help us fight or grieve or whatever we are feeling

Hospital - Aug 18 AM

August 15, 2014, Friday

Today started pretty nicely. I woke up to Deb coming into my room at 5:30 AM. She had cleaned up from the day before and looked lovely. She was wearing jeans and a white linen shirt and her sandals. She sat beside me and fell asleep in the chair that is built for fat people. (It’s giant.) We snoozed and dozed until around 8:15 when the guys showed up to take me to the Radiologist for more biopsy samples.

That was a really bad experience. The guys were rough and I awoke when they were shoving the tube down my liver. Oh man did that hurt. I think they held my arms down while they shoved more anesthetic down me. I was saying, “Hold on…. Just let the anesthesia take hold!” The nurse manager came by and got a statement from me, in which I was very careful to say really nice things about the guys who were pleasant, and give her the facts on the ones that weren’t.

So they dug pieces of me out, little mouse bites of my bile duct where it’s constricted and then a scrubbadubdub of the same area to get some cells in general. This goes to the lab, and that technician gets going. Dr. Fuller came by again and we discussed it. I told him I wanted to hear from him regarding the prognosis, and not Dr. Hyena mouth.

To that point, I had a pretty lengthy break-down with my good friend Liz Powell this morning. She was here talking to Deb and me, Pres was behind my bed. As we were talking my realization of the irony of cancer treatment really settled in: the proscribed treatment won’t always cure you. Up to this point, I have pretty much gone under the knife, taken horrible pills, endured awful procedures because at the end of them, I would be cured.

Cancer is a little more nuanced. It’s a combination of things. And while this is obvious to the reader or casual observer, it’s a far more sobering realization for the person with cancer inside them. Do all these horrible things to your body, and you might live. Don’t do them, and you’ll die. This is a hard trade-off.

What really aches is that the trade-off I am making is my family, my wife, my house, my loved ones… all in juxtaposition against this disease. If I don’t fight, then all those things go away from me. And I am all alone. I am solitary in whatever plain I would then exist. This is not consoling for me. There is no one beyond the grave I want to see more than my family here on this world. I want to remain here. This was my realization today… so abstract and yet so concrete. So concrete.

Liz held my left hand, Deb my left knee, and Pres had his hand resting on my head. After a while it got hot. I had to move it. Pres loves me so much and I deeply appreciate him coming and taking care of my precious ones. He is a good big brother.

What gave us some comic relief was the poor house keeper who came in the room and didn't even pay us any mind---just kept right on mopping and emptying and making noise while four adults sat on the bed weeping. We all said something, everyone of us. But ultimately, mr anger got the best of me and my sadness morphed to hulkish rage, "Just go away" I said and looked at this poor person with what must have been a pretty clear visual message. She left. 

We looked back on it with some humor later, but here was the learning for me: I immediately felt bad and expressed it. Liz helped me get over it without the anger I generally feel from my upbringing. It was refreshing. The anger was dispelled and I was able to return to peace and presence. 

For me, I was able to ultimately boil down Liz's message to this: Is this helping me get better? It is a good comment for me to keep in mind for the moment since, at the moment, I don’t have anything to really rally against. I am preparing for the unknown race. I have a fight ahead of me, but my enemy is not known. So, when I face emotions or situations, it is beneficial to me and to those around me when we ask, “Is this helping me get better?” Not surprisingly, anger at others doesn’t help much. What is a little surprising is that with this simple question to yourself---at least for now---the anger dissipates quickly leaving room for peace.

Hospital - Finding Out

August 13, 2014, Seton Hospital, Austin Texas

Branches and roots, each as over-come as the other, one in the liver covering both lobes thus making it impossible to cut out, and the other in the pancreas--“Not as serious”--according to the boot-wearing doctor with the easy demeanor and disarming smile. His student, Melinda, at the foot of the bed would be telling me if choledochal cysts are genetic in the morning. “Thanks, because I have three children.” (FYI these cysts can exist for years without being noticed and can live on many different organs. I had one on my gall bladder too. Doctors cut it out when I was 7.)

The morning it all began.
My socks were made for giant fatties.

The severity of my particular tumor conveys with the inability to “resect” it, or cut it out. Can’t do that because I have to have some part of my liver to live and the branches are well matured through both left and right sides. We have to shoot it and me full of chemotherapy to try to shrink it first. Then we can consider our next steps. 

Deb and I have been waiting all day, or actually two days, for this information. It keeps growing darker. The first glimpse was just a growth outside the duodenum that was causing a stricture. Then the famous line this morning from Dr. Binh Pham, “No, I am not 98% sure this is cancer. I am more sure than that.” His biopsy turned out to be false, as in not cancer. 

But five days ago, Friday August 8, I had an MRI done on my abdomen. Dr. Rob Fuller looked at it today. His suspicion is a double-sided dose of devil’s breath. He won’t know for sure until tomorrow or the day after, or the day after that. But it’s apparently a pretty damning image he’s looking at. By the way, it’s the first time I have worn my wedding ring in an MRI machine. It hopped and buzzed on my thin finger in rhythm with each magnetic pulse.

Tomorrow, we go back under for the radiologist to do what they should have done the first time, which is get a sample of the suspicious material. Then we send the samples to a lab somewhere, and there a very official-looking technician will run some dyes and tests and pronounce, “carcinoma.” And my life will have irrevocably changed in some faraway place that the technician doesn’t even consider.

What will this hold for me?  To be sure, some terrible nights. To be sure, some terrible days. I wonder about the other people around me at the clinic. What will they be like? Will they be stalwart and brave, or sallow and defeated? Will they be like Lance Armstrong, kicking cancer’s ass? Or like a cow led walking to suspicions of doom?

I will … be … who knows? I will be stalwart for sure. I will be liked by my friendly tormentors. I will make them laugh. I will know their names, and if I remember to do it, I will write their kids’ names in my phone and so I will remember those too. I really hope they’re likable. I need to remember to remember that I will see them a lot, and so avoid the potential to say something mean to them.

Prelude

Early August, 2014

In June I began feeling bad. My appetite was limited. I couldn't eat much. I had reflux. I lost weight. My skin was slightly yellow. I started seeing doctors when I cam home early from vacation in mid July. Then on August 8th, I finally had an MRI. The suspicion was that my bile duct had somehow malfunctioned as it had in early 2002 and I was suffering from a minor case of the major infection I had then. In 2002, I was very sick and vomiting. This year, only slight discomfort, but Debra thought I might be yellow. The doctor called me the same afternoon on the 8th to let me know they would need an endoscopic procedure to put a stint in my bile duct to ensure that it stayed open.

On the 12th I got a call from the scheduling offices for Dr. Pham, apparently one of the city's best for the "ERCP" endoscopy procedure. That led to the beginning of the journey I am on now.