Enjoying Life In a Time of Uncertainty: Catching the Big One 

Even though life is uncertain with having battled hard and long against stage IV cancer and a second unrelated cancer of the kidney and not being sure if cancer will come back for another siege, Mark manages to enjoy his life.  His friend and former co-worker Alan visited Mark in Thailand last week. There was scuba diving in the waters off Pattaya and there was fishing by Alan, Mark, and Mark's friend Ann. The big one was caught and released. Alan is back in Reno probably working, watching football, or skiing  When I talked to Mark yesterday. he was cooking something Thai and preparing a series of Thai food recipes complete with pictures. To those of you battling cancer or those caring for someone with cancer, take a few deep breaths and relax as much as you can, savor the moment free of worry. Worry-free moments fortify us to do what we have to do to win out over cancer and other challenges in life.

Mark is still in Thailand. He reports he is feeling fine and is now six and a half years from diagnosis. He and I discussed this week how it felt to be told "You have three months or less to live. Go home and get your affairs in order. Here is a bottle of liquid morphine to help with the pain of your esophageal tumor. So sorry." His response at the time he says was "No, I'm going to get treatment somewhere and I am going to do everything I can to live." And so he did do everything he could think of including: treatment in Bangkok, staying away from people as much as possible (harboring germs), living  in a very clean environment, having oncologist provide injectible medication for low RBCs and another medicine for low WBCs for mom to inject at doc's direction, staying on top of dehydration and fighting nausea and weight loss and a million other things.  In modern day treatment in the USA most people have a port put in place for injections. Mark did not have one so he was stuck with a needle for all chemo, scans requiring meds, IVs for dehydration, etc. He did not have a feeding tube of any kind. Six years ago there was no PET scan in all of Thailand so there were no PET scans.   A fighting spirit, support and prayers from around the world, good docs (Theera Umsawadee and later VA docs), supportive friends and family, luck and who knows what else kept him alive these good years. Today you can find him checking out a temple or on a Thai beach. He deserves every enjoyable and peaceful moment he can get.

Mark and the Hydra: A Beast With Characteristics of Esophageal Cancer 

Note: You can click on this picture or any picture in the blog to make it bigger. The Hydra which is found in the literature and depicted in statues in many places in Asia is an ancient mythical beast  unlike esophageal cancer which is a real modern day beast.
The Lernaean Hydra was pictured as a reptillian like water beast having many heads. If one head was cut off then two more grew back. The breath of the Hydra was extremely poisonous. Hercules killed the Hydra of Lerna who lived in the lake of Lerna.   Under this lake was said to be  an entrance to the Underworld which was guarded by the Hydra.Sometimes it feels like we cut off the head of esophageal cancer and two grow back but then again like Hercules sometimes our oncologists with great help from the ones who have EC and their friends and caregivers manage to kill the beast.

Mark is in Thailand.
Why does Mark often stay in Thailand when not getting treatment in the USA? When asked, he's mentioned the tranquility of the people  and the calm way of life. Mark loves the way people accept what you do and who you are. Thai people are not intrusive and don't ask things like "why did you do this instead of that?". They seem to assume you made a good decision and are on the path you want to be on or will find that path. There is a less stressful way of life. Keeping stress low helps fight cancer and/or it's reoccurance. Mark eats healthier if not eating red meat is healthy for you. Most Thai people don't eat beef and it is not something as readily available as in America. Mark eats lighter meals and walks the beach daily to keep his weight under control. Mark has a few health problems which probably are related to his chemo and radiation treatments and the shadow of cancer is always there. Mark has an e-reader that his sister gave him and he uses it every day. Reading a lot keeps his mind off worries. He has a good hospital he can go to when he needs medical care.  So far Mark is staying alive and others with esophageal cancer with metastasis are writing to say that his staying alive and enjoying life is providing them hope. Mark is most grateful that people have prayed for him and some continue praying for him. He is so happy that people care about him. He is amazed and  pleased when he hears his story gave someone hope. I'll try to post some pictures and talk about Thai culture and mythology.

Mark's Eighth Birthday Since Given Three Months to Live

To celebrate Mark's birthday this year we joined our friends and co-workers from Austin Family News magazine at the Dell Diamond to party on the private patio and watch baseball. The owners of Austin Family provided a chocolate birthday cake for Mark as well as hamburgers, hotdogs, chips, cookies and adult and children's beverages.. We did a second celebration after volunteering at MEDICO (Medical, Eye, Dental International Care Organization a day or two later. We packaged pills for upcoming MEDICO trips to Honduras and Nicaragua. We swapped stories with other volunteers telling about drinking river water purified with a few drops of chlorine solution and traveling into the Moskito Coast in WWII army planes and going scuba diving on Roatan after MEDICO trips. After volunteering we headed to Steiner Ranch Steakhouse which sits up on a hill overlooking Lake Travis. We celebrated Mark's birthday again outside on the patio. Mark only lets us celebrate his birthday for about a week. I celebrate mine for a month.

Mark Celebrates 7 Years since Prognosis of 3 Months, or less, to Live
In 2005 when diagnosed with esophageal cancer with metastasis to the liver, Mark was just 44 years old. He was a little over three months from his 45th birthday and we were pretty sure, from what the doctors told us, that he wouldn't see his 45th birthday. Mark is now 51 with that 52nd birthday coming up in April. Like so many people who celebrate surviving a diagnosis or an accident, Mark celebrated 7 years of survivor ship to a greater extent that he normally celebrates his birthday although that can be a big adventure too.

Mark is recently back from a ski trip with his long time friend and former co-worker Alan. They celebrated his anniversary of diagnosis and 3 month prognosis. Mark and Alan rented a car in Reno and traveled through 4 States skiing at 6 ski resorts. They were in California, Idaho, Nevada, and Wyoming. They enjoyed the slopes in Tahoe, Jackson Hole, Squaw Valley and other places. Mark doesn't keep this pace up all the time. He paces himself and has days of rest between adventures.

Since coming back from skiing, Mark has been making his appointments at the VA in Houston and sticking to smaller adventures such as a trip to the boardwalk at Kemah, Texas.

A word of advice from Mark: "Have as many adventures and all the fun you can and do as many nice things for others and the environment as you can." You never know how long you really have so make the most of it.

Early Christmas in St Georges' Caye, Belize
Mark, his mom and step-father went to Belize from December 10-17. We flew into Belize City and went by boat to the St. George's Caye Resort. Our cabanas were over the water so water lapped underneath and lulled us to sleep. Every morning very early we found our choices of coffee or tea and juice placed on a table outside the door. What a treat.

While at the resort Mark went snorkeling, scuba diving, kayaking and fishing. Richard, our guide for fishing took us up and down the river waterways near Belize City. We were sometimes casting near the shores and sometimes trolling. There was a pot of money for the person who caught the biggest fish and that was Mom although Mark caught some very nice fish that were much better for eating. Of course the biggest ones got away. Mark also caught some fish off the docks with just a line and hook. The fish were specially prepared by the resort chef and his staff for the guests.

Mark spent time reading on the beach and on the docks. He continues to be an avid reader which takes his mind off cancer for awhile. He is approaching 7 years since his diagnosis of stage IV cancer with a prognosis of 3 months or less. Every day is a gift. There is that thought creeping into the consciousness now and then of "what if cancer lurks within and pops up again?" We have to put that thought aside and live life to the fullest. Great adventures like going to Belize are part of that plan to cram into life all we can.

Mark is Still in Thailand and Helping Jerry Make Another Movie
Our friend Jerry did some filming for "Fembots" his new movie around Austin and Mark's mom had a small role which was filmed down on South Congress. Now Jerry is filming in Thailand and Mark has a role. It's a small world isn't it. It's the rainy season and it rains about every day sometime during the day.Some areas of Bangkok have been flooded and the airport was closed a few days. When Mark was going to Bumrumgrad Hospital for treatment, some days our taxi would turn off Sukumvit (street) onto the narrow street to the hospital and the street would be flooded. A boat would have been more in order for getting down the street.
Mark will be back soon for a CAT scan (maybe a Pet scan) and consults with his oncologist and the kidney doc. Cross your fingers and also pray for a good report for Mark.

Mark Is Encouraging Others With Esophageal Cancer By Staying Alive and Well

People with cancer, especially esophageal cancer with metastasis e-mail periodically and relate how Mark's story has given them hope and encouragement in their battle against cancer. Mark loves the idea that his story can encourage others. I think back to when Mark was so sick that we thought he could die any day. When we traveled we never knew if he would make it back alive. Sometimes when traveling with Mark, I thought about my friend who took her mother to Europe on a fun vacation. Her mother was sick for a month and died unexpectedly in Europe. My friend brought mother's ashes back in the overhead bin and later talked about how strange and heartbreaking that was, but she did it. Her sharing this story impressed me with the idea that we all do difficult things when we have to. We arise to the occasion.

Mark is now in Thailand again. The food there is less fattening than here and he is walking more so he has lost down to a healthy weight. His weight has been up and down for the past 6 years so he has a small wardrobe of currently fitting clothes. Mark's friend and former co-worker Alan is going to visit him in September and Mark has some fishing plans for himself and Alan.

Thai politics are heating up. You may recall the demonstrations last year in Thailand by the red shirt party (Peua Thai party) with the airport taken over and closed for awhile and the Democratic party soldiers in the streets of Bangkok with tanks and yet helping old ladies across the street. Former prime minister Thaksin Shinawatra is of the Peua Thai party which is considered the people's party in a battle of haves and have nots. Somehow Thaksin is a billionaire and one of the haves which raises some questions. He was accused of corruption and ousted in a military coup in 2006. He is in exile in Dubai. It is of interest that Sunday, his sister Yingluck Shinawatra, a US educated business woman was elected Thailand's first female prime minister. Will she be a puppet of her brother or not? The Peua Thai party holds 264 of 500 seats in the Thai parliament and the rest are held by the Democratic party. The Democratic party is the party associated with the royal family and the military. They have been steadily loosing power and seats in Parliament. Is there a similarity to the US?

Mark Celebrated His 6th Birthday Since Prognosis of 3 Months or Less to Live

Mark celebrated his birthday by going to one of the many food trailers in Austin to have some tacos. He is wearing the birthday glasses I bought in Thailand. The glasses play the Happy Birthday song and the candles have lights that flash off and on. Mark wasn't too keen on posing with the glasses but being a good sport he let me get a picture of him with the glasses. Mark has been raising a vegetable garden on our decks and keeping the pool clean which has been no easy feat during the time the live oak trees over the pool loose their leaves. He will soon go back to Thailand and we will miss him.

Another Friend of Mark's Died this week
Ron Cruzan (1960-2011)
Mark met Ron in junior high. They were friends through high school and after. Mark and I visited with Ron and his mother a couple of years ago when it was high school reunion time for Mark and Ron. The guys hung out for a few days, and in the past month they have talked on e-mail and on the phone. Ron will be missed and remembered always.

Ron cooked in a number of restaurants in his hometown over the years. I think he enjoyed cooking. Mark loves to cook. Every day he cooks something that is amazingly good. Even when Mark was his sickest during early chemo and radiation days, he would cook when his nausea and vomiting subsided a little. He'd send me off to various stores in Bangkok to get the ingredients and he would fix something that appealed to him. I've been thinking of doing a cooking blog for Mark and perhaps calling it "What's Mark cooking today?"

More on Mark's Kidney Tumor Removed Using the da Vinci Robotic Surgical System by Da Vinci

Mark was seen today for postop follow-up in Houston. His oncologist and surgeon both told him his tumor was cancerous and the cancer was called "clear cell" carcinoma.

You can read about the da vinci robotic arm system at http://medgadget.com/archives/2005/07/da_vinci_robot.html See picture of same above. It is like three arms on a post. Each arm has a wrist with 8 degrees of function. The surgeon sits across the room from the patient with their arms inserted into a console. The focus is adjusted by foot pedals.
Addendum 1/12/2011 Four days before Mark's surgery Time Magazine Dec. 13,2010 had a seven page article on the Da Vinci surgical robot. We just read it today. The article says there are a thousand hospitals and clinics in this country and 400 others in the world that have this machine and that half of all prostate cancer operations are done using this robot.Dr. Mani Menon, born in India, was the first surgeon in this country to use a robot to remove a cancerous prostate gland. He was a protege of Dr. Patrick Walsh of Johns Hopkins and learned Dr. Walsh's technique for doing surgery for prostate cancer that left the patient still potent and continent. This technique had the surgeon doing the work using his hands and going by feel not sight. Using the robot, Dr. Menon and now others, can see the surgical site. In 2000 Dr. Menon opened the country's first center for robotic prostatectomy at Henry Ford. Currently the da Vinci robot is used for many types of surgeries in various parts of the body. The da vinci robot costs more than one million dollars and after each procedure parts worth around $1,500 have to be replaced.

Happy Holiday Wishes From Mark and Family and Follow up on Gout vs Infection
We are having our family gathering at our house on Christmas eve. We will cook a lot and our friend Suzie will help us cook. We will do a white elephant gift thing and play some games. Mark's sister will stay in Okinawa. We urged her earlier to take her Christmas vacation and head to Thailand for her health check-up which she did...and it was a good thing. When Mark gets better maybe we can go visit her.
Mark is not feeling peppy. He is taking it easy and will go to the VA hospital in Houston on Dec. 29. He will see his oncologist and the doctor who did his kidney surgery. Maybe there will be a report on the kidney tumor. Maybe we will will find out if it was malignant or not and if it is a primary tumor or metastasis.
To follow-up on Mark's earlier hospital stay for intense pain and swelling in his elbow: It was gout. Mark had another bout but managed it at home and it subsided just before going to Houston for his kidney surgery.

Mark is "a lucky man" According to the Surgeons
Mark was released from the hospital yesterday (Sunday) after the doctor told him how lucky he was. It turns out the docs were able to save 99% of his kidney. The doctor explained that the tumor was growing on top of the kidney like a tree with only the trunk dipping into the kidney so it seems they only had to core out the trunk. Mark had great doctors and great nurses and nurse aides. Everyone of the staff were super. The pictures above include Susan his favorite nurse (although he liked and appreciated all his good nurses) and the cutest Santa whose name I did not get. You can also see a picture of Mark's wounds...a few incisions where the robotic arms were inserted and his Jackson-Pratt drain.
On his fist and second post-op days, Mark was no longer doing dance steps and was not joking with the nurses as much. He was still in and out of bed and walking a lot but he was having pain and was tired.
Mark was worried about the trip home and all the jarring from the road which causes him pain, but he survived the ride home nicely and without complaint (except for my driving), reading a book all the way home..

Mark's Kidney Surgery and Follow-up About the Gout ... We started the 3 hour Houston drive on Thursday at 4 pm not knowing if the surgeon had clearance for Mark's surgery on Friday or not. We were 90 minutes on our way going on faith that the surgery would take place when the surgeon called to say that the surgery was cleared. Traffic was very heavy as we got into Houston but we arrived safely...and too tired to go out to eat so we ate at the hotel.

We were told to report to the VA Hospital at 0530, so we were up at 0415. Mark was in surgery at 0740 and stayed there for four and a half hours. It was a partial nephrectomy, robotic arm assisted. The doc finally came to tell me that surgery went well...they saved 90% of the kidney. The margins around the tumor which was cored out were clean.
After about 25 minutes I was able to go to recovery room and Mark was wide awake and joking with the nurses. He immediately asked me to get his Kindle book reader his sister Stephanie sent him. He was in his room in another 30 minutes, and luckily he got a private room. He retaped all his tubes himself, got up, stood at the bedside and did some dance steps, sent me to get iced tea and candy, joked with the nurses and walked all over the hospital. At one point the nurses thought he was walking the hall, but he'd gone downstairs into the fresh air. He may get to come home tomorrow (Sat) to continue his recovery. More info on the tumor that was removed, when Mark gets a report.
PS Mark's elbow pain and swelling was due to gout. He had a second bout of gout but not as bad as the one which put him in the hospital. See earlier post. The second bout subsided in time for the kidney surgery. Good timing.

Mark is in the VA Hospital in Temple Texas
The guys from Reno, Alan and Mike, were here and great fun was had by all especially at the football game which UT won on a beautiful sunny day. Mike went back on Sunday and Alan on Tuesday before Thanksgiving. On Tuesday before Alan left, Mark was up at 3 am complaining of excruciating elbow and arm pain. When the local VA clinic opened James and Alan took Mark there. Mark ended up going by ambulance to the VA in Temple. He had x-rays, labs, fluid taken off elbow and now bets are being taken over whether it is an infection or gout. Mark will miss turkey day at home. The docs have disappeared for the holidays and there is apparently no one to discharge him or give him a pass home. What a turn of events! Oh well, this too shall pass and we'll go on to the next adventure.

Mark Will Be in Austin Soon and And So Will His Buddies Allen and Mike

Mark's friends and former coworkers Alan and Mike are coming from Reno for a visit this week and Mark is coming from Thailand to get ready for his kidney surgery in December. The guys have tickets to the University of Texas football game on Nov. 20th. Barry who sold us some of his family's season tickets has invited the guys to a tailgate party. This is exciting like getting extra icing on your piece of cake. Barry let me know that someone has been making a documentary of their tailgate party and they have a lot of footage already, but wouldn't it be fun if Mark and the guys could get in the film scarfing down some ribs or chicken or something? Mark gets his energy to fight cancer from doing fun stuff and being with fun people. Having something to look forward to and then enjoying is always good medicine.

On August 2nd Mark went to the VA to Schedule Surgery for Renal Tumor

Mark and I made a mad dash for Houston on Monday for a 3:30 appointment regarding his upcoming surgery for a renal tumor. About 4 pm he saw the most knowledgeable lady doctor who showed us the MRI and the tumor. Mark will probably have three incisions which is lots better than the large incision we thought he was going to have. Mark is hoping to schedule the surgery for a little over a week before Christmas. The plan is a couple of days in the hospital and then home for about a six week recovery. This may be renal cell cancer separate from his adenocarcinoma or it may be metastasis from the adenocarcinoma of the esophagus or it could be benign. We will know when the tumor is examined after surgery.
As you may have guessed we got away from the VA in time to play with the rush hour traffic in Houston before exiting the city for Austin.
We wonder how many people have experienced two different kinds of cancer. If you had two different kinds, please post a note.

Mark just back from an 11 day trip to Lake Tahoe, Reno, and California
Mark went camping, fishing, and seafood-eating with Alan and Mike, guys he used to work with in Nevada. They had a lot of fun, caught a lot of fish and saw a white whale. Mark needs days of fun to help him deal with fighting off cancer. At the present time he is 5 years and 5 months out from his diagnosis of esophageal cancer with metastasis to the liver. Does he have cancer now? Is it in his kidney or lurking somewhere else?

Although Mark's recent pet scan was clean, his MRI showed that his small kidney tumors have doubled in size in the last year. He will see the urologist/nephrologist this coming Tuesday and he will see his new oncologist at the VA the next day. Mark is staying positive. He's ready to head to Thailand and has a ticket for August 11, but could end up staying longer for kidney work.

We'll miss Mark when he heads to Thailand. We really enjoy having him close by - he is good company, keeps the pool clean (having brought it back from green to beautiful blue), keeps the grass mowed, the kitchen clean, cooks, and is upbeat and positive. We've all seen what a tough battle he wages against this cancer, and it's both impressive and especially nice to see him in such good spirits.

In the meantime, Marks sister, Stephanie, has taken a transfer of sorts with her job and moved to Okinawa, Japan, with her ancient cat, PingPong, in tow. This means she will be much closer geographically to Mark and I will be able to potentially stop in to see her both on the way to/from Thailand. We're waiting to hear her first impressions of Okinawa, and perhaps both Mark and I will be able to visit her while she's there.

I'll put some more cultural information about Thailand on the blog soon.

Mark in Austin at the Tacco Express

Ever heard of the expression "Keep Austin Wierd?" One of the places that lives up to this motto is the Tacco Express on South Congress. On Sunday at noon and some evenings, there is live music. Today's music was a gospel and blues group. Some people dress up in things like tutus feather boas and dance. That includes men as well as women. Sometimes people show up dressed to the nines while most go casual or off beat. If you go, you will fit right in.

Mark has been busy since getting to Austin. He has been to the Veteran's Hosp. in Houston twice and has to go again. He has cooked brisket in the smoker, brought the swimming pool back to blue from an ugly algae green, been working on healthy living from eating healthy to exercise and has cared for the yard. Another trip to the VA for an MRI is scheduled for next week. You might want to pray (or send good energy Mark's way) that his test results are good.

Life in Thailand
Soon I will put something more on this blog about life in Thailand.