July 2008

Mark’s Colondar Bio

From the outside, Mark Weiss was finally living his dream. He left Silicon Valley to run a bakery and B&B in wine country, was married to a wonderful woman, and they were expecting their first child.

Mark’s only complaints were some rectal bleeding and fatigue that were attributed to hemorrhoids and working too hard. After a year of worsening symptoms, Mark’s doctor scheduled a colonoscopy that uncovered an obstructing tumor. Mark was diagnosed with stage III rectal cancer at 32, the night before his daughter’s birth.

Although he was facing harsh side effects from chemotherapy, radiation and surgery, Mark and his wife continued to run the bakery to stay financially afloat.  Through his physical and financial struggles, Mark never forgot his reasons to live – his wife and baby girl.  One of the greatest lessons he learned was that a support network and counseling are crucial not only for patients but also for families.

Today, Mark and his wife treasure every day together and have dedicated a cottage on their property as a retreat for people dealing with cancer. Their daughter is a constant reminder for both of them of how important and inspiring family can be in the most difficult times.

Mark’s story as told by Mark

I was diagnosed two and a half years ago, November 9th, 2004 at 7:37pm.  It was the night before the birth of our first child.

For the previous year I had been feeling run down.  I attributed it to all of the hard work it took starting up a new bakery business with my wife in an abandoned restaurant on 3 overgrown acres of California’s coastal wine country.  I was also fixing up the dilapidated old cottages and figured that I might be getting burned out.  It seemed strange to me since I loved everything about my life and have always had a passion for living that gave me tons of energy.

Then I was hit head on by a truck that January.  After that I just assumed my fatigue and other symptoms had to do with the trauma from the accident.  Then my bowel habits began to change; inconsistent regularity – going from once to eight times a day, occasionally with some blood.  Then the stool became smaller.  I had myself half convinced that I had become lactose intolerant, which at the time I thought was a cruel fate for a baker committed to cream and butter.

But when the blood started to become more regular and in larger quantities, I asked my doctor about it.  He checked it out with a tube and a flashlight and said that it might be hemorrhoids.  I was so young and healthy with no family history, it was unlikely anything more serious.  But he was cautious and suggested increasing fiber in my diet and checking back if it didn’t get any better in the next month or so.  It didn’t, so I saw him again and was told to try increasing the fiber some more and to get back to him in a month if it didn’t improve and then he would schedule a colonoscopy to be safe.

Of course, through all of this, life still kept happening.  We were being blissfully happy newlyweds and had decided to try and start a family.  And so, in the middle of all of this, Elizabeth became pregnant.

With the chaos of a new business, a newly pregnant wife, physical therapy for my injuries, taking child birthing classes, trying to prepare for a new baby in a one room apartment above the bakery while still doing everything possible to enjoy each other before our daughter arrived, it was almost a year after my first doctors appointment before my scheduled colonoscopy.

As luck would have it, we had to have a C-section because our child was breach.  And the only opening possible for my colonoscopy was two days before the C-section.  But I figured, I really want to rule this out and stop worrying about it, so I didn’t cancel, went in, paid the steep insurance co-pay and blissfully drifted off to sleep.

My New Reality
My Mom was driving up from Los Angeles for the birth of her first grandbaby.  I saw her first.  She was trying so hard to smile and look strong, but I could tell that something was terribly wrong.  Then from face to face, I saw the nurses and doctors, and they made no effort to pretend that I was OK.  They showed me some color photographs of a large growth 12 cm up that was nearly obstructing.  They said that it might be cancerous but that they had to send it to the lab for confirmation.

The next day was one of the longest of my life.  Just waiting for that call.  Walking around town with my 9-month pregnant wife and my Mom, trying to focus on the magic of having a baby the next day.  I called my doctor since he had gone over during the colonoscopy when the tumor was found.  I remember him telling me that sometimes cancer can be a great gift.  For some people it can be a wake up call to take a real look at themselves and their priorities.  It can lead to them leading fuller lives and following their dreams.

It was so hard to hear.  I needed no wake up call to appreciate my life.  I often told Elizabeth that my two favorite times of day were going to bed next to her every night and waking up next to her the next morning.  Every night thanking God for another wonderful day being alive and with a wonderful woman I loved more every day.  And every morning awakening feeling so grateful at having another day filled with so many blessings.

As to following dreams, I needed no help there. I quit a rewarding and high-paying job in corporate finance in Silicon Valley and sold everything I had to be able to barely afford an abandoned restaurant in Sonoma County to open a bakery in the middle of nowhere to pursue our long-term dream of a bakery & B&B.  In college I would swing dance 5-6 nights a week until 2am and then row crew for UCLA at 4am because I loved it all so much.  I gave up every job lead I had in California after completing my business degree in Illinois because after knowing a woman for only 8 days, I believed that she might be the one.  So I forewent the interviews and put my professional life on hold because if I didn’t find out if Elizabeth was the one, I would always regret not taking the time to find out.

There has never been a time in my life when I have not followed my dreams.  I did NOT need cancer to teach me that lesson.

So I get the call after 7pm to come see the surgeon.  So there we all are, my very VERY pregnant beautiful wife, my Mom, who had just lost Dad not even two years earlier to mesothelioma, the surgeon and myself talking about how I’m looking at stage III or IV rectal cancer.  Surreal and crushing doesn’t begin to cover it.

He goes over a cursory review of the tests to be done and the standard treatments.  I have my wife and Mom leave to ask him some of the harder questions.  Then I drive us to the store where I pick up some rib eye steaks and veggies.  Then I go home and cook my family a hearty dinner to help sustain us through what was to come.

C-Sections, Babies and Barium Sulfate Smoothies
On the way to the hospital I stop to get my blood work started.  Then laughing and joking in hospital gowns to take our minds off of everything.  Then we’re in the operating room.   I’m cutting the cord and holding my daughter.  My beautiful full haired plump and roly-poly Michelin baby daughter.  Her rolls had rolls.  She recognized my voice and I felt so blessed and lucky.  Sigh.

Over the next few days Elizabeth remained in the hospital and I tried my best to be a supportive and happy father and husband, taking pictures to email to all the friends and family and getting Elizabeth whatever she might need and taking care of Ella so that she could recover from the surgery.  Meanwhile I was researching treatment options, getting CT scans, talking to multiple oncologists and radiologists, and, my favorite of all, trying to light a fire under the insurance company to OK it all.

A couple of my great high school friends came up and helped me to keep Elizabeth company and keep the focus on her and the baby.  They were great in shopping for decorations for the baby’s homecoming to the bakery and helping wherever they could.  But, of course, they could only stay for a short time before their own families and work obligations could be ignored no longer.

It was hard with no family or close friends around.  Some people in the community were very supportive, but there was only so much that they could do.  I could sense Elizabeth being overwhelmed and tried to talk her into taking Ella to Chicago to be with her family while I went through the treatments in the city, but she soundly refused.  I could sense her distancing herself from me.  We talked about it and she said that it was what she had to do to survive.

While researching my treatment options I made myself eat to try to put on weight and went on many runs.  On these 5-mile runs I would pray and try to come to grips with what I should do.  I finally found clarity and peace through my prayers.  I knew the following:
•        I would take every possible treatment option available that would increase my chances of being around for as long as possible for my family, regardless of unpleasantness and long term risks to myself
•        I would do everything possible during my treatments to minimize the difficulties of my family
•        Taking care of Ella was the most important thing.  Elizabeth was next, since it was imperative that she be supported to take care of Ella
•        I would never refuse my daughter a dance.
•        I thanked God that the cancer had hit me rather than anyone else in my family or Elizabeth’s family or my friends.

The Slings and Arrows of Treatment
I fought hard to get involved in a clinical trial.  It started with the standard of care, a cocktail of 5-FU, leucovorin and oxaliplatin, but then boosted the frequencies of the chemotherapy.  They would pickle me silly with chemotherapy while giving me radiation 5 days a week for a couple months to try and shrink down the tumor.  Then surgery.  Then more chemo.  All in all a year of joyous science.

I thought that I knew what was coming because I had seen some people deal with chemotherapy.  I was not ready.  I was in such denial it wasn’t even funny.  I actually thought that it would be a great opportunity to spend quality time with my new daughter, catch up on some reading, and explore San Francisco with Elizabeth and Ella while staying in the basement bedroom of friends in Twin Peaks.  A forced multiple month vacation in San Francisco, if you will.  Could be fun.

Ha.

The level of my denial can be summed up in my actions the evening after my first set of chemotherapy and radiation.  I was feeling a bit down and wiped out, and Ella needed diapers so I decided to walk to the store a couple miles down the hill to get them.  And, if I’m going to go, I might as well turn it into a run.  So I ended up running over five miles through the hills of San Francisco, carrying a jumbo pack of diapers (hey, they were on sale, OK?), getting lost and finally getting back to our friends house, saying, “I don’t feel so good.” then collapsing downstairs.

I did not know you could feel so sick and still remain alive.  By the end of the two month regiment, getting radiation 5 days a week, Xelota twice a day every day and Oxaliplatin once a week, I couldn’t sleep for more than 15 minutes at a time with the pain and nausea.  The last few weeks, the radiation burns inside and out caused me to stuff a towel in my mouth every time I had to go to the bathroom so I wouldn’t wake anyone up.

Then six weeks for my body to recover before the surgery.  Then a few more weeks before they started in on the chemo again.

The Worst is yet to Come

Finally it was over.  I was still weak and had some days where it was harder than mile 22 in a marathon to simply get out of bed, but it was over.  I felt as though God had carried me through the greatest challenge of my life.

But that was yet to come.

As it turned out, someone from the community who it seemed had befriended me during my treatments brought about an even greater challenge.

Going into it we had it all.  We were two basically nice hard-working people totally in love, just living the dream.  Not much money, but we were happy.  Together we were building a future.

And even when the hardships came, we just did our best.  I could tell that Elizabeth was struggling and was upset with me for being sick, but she refused to talk to me or anyone else about it.  She patently shut down my suggestions for her to take Ella back to Chicago while I went through the treatments in San Francisco as well as shutting down the bakery for a while.  She felt as though she had to take it all on without talking about it to anyone.

She was shell-shocked.  Going from having a strong, laughing, passionate husband with a bright future and a beautiful baby on the way to suddenly a weak, pain & nausea-ridden skeleton could not have been easy.  On top of that add a new baby and the hormonal changes that brings.  Plus a new business that was barely doable with two healthy people without a newborn.  She was overwhelmed and plugged away, without dealing with the emotions.

I hope that people reading this who are going through this ordeal will learn something from what I went through.  And that is to not be too hard on yourself.  Even as a caretaker or someone close to the person being sick, realize that it is better to ask for help and seek professional counseling.  You may not think that you have the time, but you need to understand that it can happen to anyone.