Health Topics

Five years ago, my wife and I went out for a run on a crisp March morning to begin training for a
marathon.  It was the Spring of 2007 and we had just moved from Arizona to eastern Oregon to be closer to family.  I had just opened a new law practice and we bought a small 10-acre farm to raise cattle and kids. All in all, the future looked very bright.

I had run a half-marathon while serving in the Army, but Missy and I both had always dreamed of running a marathon.  As we turned back towards home during our first training run, I began to come up lame.  I rested and took Motrin, but after a month of increasing pain, I went to the doctor.  Guess what… he prescribed rest and Motrin!  About a month later I was sitting in my office with a friend discussing anything but work when we saw two miscreants breaking into a car in the parking lot.  Not thinking, I took off after them.  Within a couple hundred yards I collapsed, my leg no longer able to carry my weight.  A quick call to the local police had the criminals caught within 15 minutes and would have saved me a lot of pain.

From that point on, my leg got progressively worse.  I used a cane, then crutches, as the doctors tried to find out what could be wrong.  Finally after about five months, one test showed something… a big something.  The doctors in our rural community didn’t have the resources to deal with this, and they sent us straight to Seattle Cancer Care Alliance to meet with an orthopedic oncologist.  An immediate consultation with Dr. Conrad and a hurried biopsy revealed what we really already knew, that I had cancer:  Osteogenic sarcoma to be precise.  

For those that don’t know what this is, it is a tumor in the bones.  Unlike other tumors that grow on the outside of the bones, my tumor ate away the inside of the bone, so there is no exterior tumor to easily identify it in scans.  The tumor was located at the head of my left femur and had eaten away nearly the entire bone, leaving only a 1-3 millimeter shell that somehow had not yet broken (although it did rather painfully shatter into a million pieces two months later). Basically, all that connected my leg to my pelvis was the buttocks muscles.

From that point on my life changed dramatically.  I hurriedly shut down my office and my wife and I moved to Seattle, where we are lucky to have the Seattle Cancer Care Alliance (SCCA), the University of Washington Medical Center and their many great doctors and nurses.  Of course our local doctors told us when sending us to the SCCA that this cancer care is some of the best in the world.  But I had excellent insurance and could go anywhere for treatment, so of course we checked everything out for ourselves.  We were delighted to discover just how respected our Pacific Northwest cancer care is in the medical community.  And our first contact with the osteosarcoma team simply re-enforced what our research had already told us-- the level of care and the expertise of our medical team was world class.

Besides the obvious toll cancer takes on your body, cancer also takes an enormous toll on your family. At the same time we were dealing with enormous medical decisions, we had to figure out what to do with our children, Gavin and Elizabeth.  Gavin just turned four years old and Elizabeth was two.  We didn’t have the money to rent a place in Seattle and keep our home in Hermiston, and regardless we didn’t want the kids to grow up in the hospital.  Almost all of my time over the next 18 months was spent in the hospital setting.  Normally I spent four out of every six weeks in the hospital, first at the University of Washington Medical Center and then at Kadlec Medical in the Tri Cities.  The other two weeks we would spend either at a cousin’s house or a hotel, and we would make our daily commute to our appointments at the SCCA.  Missy lived on a cot in the hospital with me the entire time. 

Luckily we had great family support and we sent the kids to California to live with their grandparents until we could find a way to get together again. This ended up taking over three months.  Being separated was very hard for us all.  Until that point, we had never spent the night away from the children.  Whenever we travelled we took the kids with us and never felt the need for date nights or alone time.  Travel was also an issue.  We live five hours from Seattle and our travel back and forth and travel for the kids to visit added up fast.  Finally we reached a point where my care could be transferred to the Tri Cities in eastern Washington. Dr. Thomas Rado at Columbia Basin Hematology and Oncology worked with the doctors at the SCCA and they took a team approach to my care. More importantly, our family was finally reunited.  But even Dr. Rado’s office was still an hour each way from our rural town.  That first year, we bagged more than 18,000 miles in just medical mileage.

Back in Seattle, within two weeks of the initial diagnosis, I immediately began a very aggressive inpatient chemotherapy regimen.  As you might imagine, treating a cancer that is affecting as hard of a
material as your bones requires some serious firepower. They started me out on the only standard chemo treatment, but the results were less than they had hoped.  So after three months and a surgery to remove the tumor and replace my hip and a portion of my femur, I started a trial of a drug combination. For the next eighteen months we endured a constant cycle of intense chemo, recovery and renewed chemo.   

Over the past five years I have developed a theory of the treatment of cancer that I call the “Caveman-epilepsy theory.”  It basically goes like this.  We have a group of fantastic doctors who have chosen to dedicate their lives to fighting cancer, and they use their art and knowledge to the best of their ability.  They have a few tools to fight the cancer:  surgery, radiation and chemotherapy.  But all these tools are inexact and cause tons of additional damage while trying to combat the cancer.  So even these brilliant people, with the millions of dollars of equipment and resources at their disposal are really just the same as cavemen or cavewomen treating epilepsy.  Imagine the caveman doctor.  He sees the patient going into spasms, so he grabs the club he thinks is best and begins liberally pounding the daisies out of the patient until he or she stops twitching.  If that club doesn’t work he grabs the next one and the next, until no more convulsions.  Solved the problem, right?  And that is basically what oncology is but with better clubs.

Back to my story.  About a month into treatment, we got fantastic news:  Missy was pregnant.  Nine months later we were given the most incredible gift-- Cate, our little miracle baby.  I also was responding well to the new protocol.  Things were looking up.  Finally, after 18 months in the hospital, two major surgeries, a femur and hip replacement, nerve damage, and a 40% loss of heart function, I emerged in remission.  The caveman’s club worked, with all the collateral damage you might expect.

At the beginning of the process, my doctors had told me the chances of reaching remission.  The odds were not in our favor, but together we beat the odds.  We were also told that usually if there is a metastasis of the cancer (assuming the patient got into remission), it usually occurs by the two year mark.  I remember clearly my two-year appointment with my doctor.  He gave my wife and me huge hugs-- there still was no sign of cancer.

Then two months later a regular follow-up showed nodules in my lungs. Nobody knew quite what to do.  Do we immediately take them all out?  Do we take one out for biopsy?  Do we wait and watch?  All of the options had positives and negatives associated with them.  So we decided to wait and watch.  Although they grew slightly, the rate was not alarming. New nodules continued to show up, but they too stayed relatively small.  By this point in my treatment, the staff at the SCCA had become family. We already had walked through 3 ½ of the toughest years of my life together, and we feel that we have a genuine bond with our team.  It was comforting to have such an amazing group of doctors discuss my case, guide us through the remaining options, and that could explain matters in a way that allowed us to be informed and actively engaged in the decision-making.

After six months of watching the lung nodules, I started to develop other symptoms… huge bruises, coupled with very low energy and slow healing. Once again the test results were no real surprise to us.  I had leukemia (Acute Myeloid Leukemia or AML), which was the result of the large blasts of certain chemotherapy drugs I had received in my earlier treatments.  The caveman’s club didn’t work quite as well as hoped.  Once again, the odds were against us. The standard AML treatments did not offer much hope, and my only real option was going into a clinical research trial.

Once again, I was immediately referred up to Seattle Cancer Care Alliance. We knew that best chance of beating the leukemia was at the SCCA.  And we knew that if we were lucky enough to
reach remission, there is nowhere better in the world to go through the bone marrow transplant then the SCCA, with their partnership with Fred Hutchinson Cancer Research Center.  Once again we found ourselves in the competent hands of a wonderful medical team, this time in the form of Dr. Estey and Kelda Gardner, specialists in leukemia. They were invaluable in helping us navigate through the leukemia trials and worked tirelessly on our behalf to get us accepted into a trial that would give me my best chance of survival. 

But leukemia treatment meant lots of trips back and forth to Seattle.  Unlike in the sarcoma treatment, I would no longer be able to travel outside a 30 mile radius of Seattle. It meant indefinitely moving to Seattle for treatment. It also meant being separated as a family again.  Once again we had tremendous support from family and the kids stayed with each set of grandparents for two months.  But it was hard for all of us regardless of how great the help we received.  We knew from our previous experiences just how hard it was for us, as parents, and for our kids to be separated.  And in the back of my mind, there was the knowledge that more than likely the treatments would not work, and in that case I would have given up six relatively good months with my family and might only be left with a few months of rapidly diminishing health to spend together if the treatments didn’t work. 

Then, while I was admitted into the University of Washington going through my first round chemotherapy on a new research trial, a social worker spoke to us about the SCCA Foundation.  We contacted them and it was like a light went on.  They were so friendly and helpful.  And they were able to provide us with a grant to help offset our housing costs and enabled us to afford to stay at the SCCA House between AML treatments.  The SCCA House is basically a hotel for cancer patients and their families. Staying there we were in a safe, sterile environment, with easy access to the SCCA and University of Washington Medical Center.  There is even a shuttle service that runs patients between the facilities. This made the daily appointments much less onerous.

Later, when I was accepted for a bone marrow transplant, we were able to move into more permanent digs at the Pete Gross House, and the cost was once again partially offset by the SCCA Foundation.  The Pete Gross House is an apartment building dedicated solely to cancer patients that is located near the SCCA and University of Washington Medical Center.  All of the tenants are there for long term cancer treatment, and many are there for bone marrow transplants and recovery.  These patients all have compromised immune systems in addition to all their other health problems. 

I remember the day when Debbie Frailey called to inform us that we were being given a grant to help offset our lodging.  She was apologetic that they could not help more, but there are so many patients in need assistance, that they have to make difficult decisions and cannot always offer the amount they would like to. We were surprised by the apologies.  The SCCA Foundation was already helping us so much.  The aid that they had provided was enough to allow us to be together as a family. It is hard to describe how much of a difference it makes to receive visits and hugs every day while sitting in the sterile hospital for two straight months.  No matter how good your nurses are, they are no substitute for the kind of emotional and spiritual boost that my energetic three children bring.

Conversely, the kids also greatly benefitted from the opportunity of living in Seattle with us. Every day that I was in the hospital, the children were able to visit. We have
found that by keeping them away while I am in the hospital is far more difficult for them than seeing me while I am sick. Fear of the unknown is always scarier.  By visiting me and getting their questions answered, they were comforted as well.

Yet another blessing was that the children were also able to enroll in Hutch School.  The Hutch School is located on the first floor of the Pete Gross House and it is an amazing resource.  The school is funded through the Seattle Cancer Care Alliance and the Seattle Public School District and is specifically for children with cancer or children who have an immediate family member going through cancer treatment.  Each day, the children staying at the SCCA House or the Pete Gross House troop downstairs to school, and a busload of kids arrive from the Ronald McDonald House and Seattle Children’s Hospital. 

The Hutch School has access to resources that our small town schools could never provide and it really helped our kids to be around other children going through the same things that
they were going through.  The staff of teachers and counselors at the Hutch School was amazing.  There is a level of empathy that pervades the entire school.  The kids loved their new school and really benefitted from the support the Hutch School offered.

Having facilities like the SCCA House, the Pete Gross House and Hutch School were important in my care as well. During my leukemia treatment and following my bone marrow
transplant, I had to be in a sterile environment because my immune system was so suppressed. These facilities take extra precautions to ensure a clean and sterile environment without the feeling of living in a bubble. I am happy to say that because of this sterile environment, I never became sick and had to be hospitalized.

The final chapter so far of my medical story has been miraculous. My doctors believe that I am unique.  A great characteristic in general, but not one you want to hear from your doctors.  My underlying diagnosis of osteogenic sarcoma is pretty rare, about 400 cases nationwide each year.  To survive it is even rarer.  To develop leukemia from your treatment is
even rarer.  And to simultaneously have an active sarcoma and leukemia is simply unheard of.

Now a year later, my new bone marrow is settling in well.  There are numerous side-effects: no caveman club is perfect.  I have graft-versus-host disease and the meds I am on have given me diabetes.  There is the insomnia, brain hemorrhages, heart damage, nerve damage, and chemobrain.  Despite all of that, I honestly feel better than I have in five years.  And all this was made possible by the tremendous progress in cancer research over the past 20 years.  And the question occurs to me, “How have we made such amazing progress?”

There are thousands of reasons that cancer treatment has managed to make so many strides and I don’t have the time or inclination to detail them all here.  But I do want to point out one thing that is
going right.  Amazing doctors, nurses and researchers are throwing their heart and souls into new treatments and emerging technologies and are achieving amazing things. And they are doing this right here in Seattle. 

But there is another piece to this puzzle.  These treatments or technologies will always remain an academic theory unless they can find patients with the courage or desperation to try them.  And that is what the SCCA foundation does.  It makes it possible for these brilliant researchers and these courageous patients to connect.  There are so many little things that would unnecessarily destroy that potential without the assistance provided by the SCCA Foundation.

Cancer always creates financial difficulties for patients. Even patients that have carefully planned out their lives and followed all the “rules” of financial planning find the many costs and burdens overwhelming.  You are suddenly unemployed.  It takes months for disability or social security to kick in.  Experimental treatments are often not covered or are only partially covered by health plans.  You may have to uproot your family and move to where the trials or best facilities are located.  The list goes on and on. 

In my particular case, we had to wait for more than seven months before my disability insurance even began.  I thought that was ridiculous, but everybody has told me that it actually is quite fast for the system.  In the meantime we had accrued nearly $100,000 in out-of-pocket expenses relating to medical expenses, temporarily moving to Seattle, maintaining a separate home, and drug expenses, etc. This was our entire savings, plus loans from family members.  And this is on top of what my supposedly excellent health insurance was paying.  Trials are not always covered very well, unfortunately.

Luckily, the SCCA Foundation has a lot of resources that can help patients like me.  In my particular case, they gave us a monthly grant to cover some of the out-of-pocket expenses relating to living in Seattle, such as housing.  But they also connect patients with other services that are donated to the clinic.  When The SCCA Foundation called and told us that we were approved for financial assistance we were excited to finally be able to move the kids up to Seattle to be with us. But the kids were staying with family in San Francisco.  Missy was going to drive all day and night to pick them up and turn right around and come straight back to Seattle because she did not want to leave me alone.  Instead the SCCA Foundation was able to match us with a special program through Southwest Airlines and Missy was able to fly down to pick up the kids. 

Without receiving the fantastic care from the SCCA, I have no doubt at all in my mind that I would not be here today.  And without the SCCA Foundation’s help I would not have been fiscally able to participate in those trials and keep my family together.  Personally, I take comfort from the fact that my experiences may benefit people in the future.  Although I hope this does not happen to you, perhaps someone reading this today may someday benefit directly or indirectly from some technology or protocol that resulted from my participation in one of my clinical trials. It is certainly my hope to leave that all that I have gone through might someday benefit future cancer patients.

We have all had challenges in life. Some of these challenges are easy to overcome. Other challenges seem as difficult to overcome as running a marathon. The end is so far away and the route is all uphill. Deciding to take on that marathon challenge, to meet it head on, to undertake daily training and crossing that starting line all requires personal courage. Step-by-step, moment-by-moment you will progress along the route.  And by focusing on that next step, you will learn a great lesson-- that you can accomplish anything one step at a time.

Cancer has also taught me similar lessons.  To have the courage to run the race.  To take life step-by-step.  To look forward to the next moment regardless of whether it might be unpleasant or even painful.  To have faith to carry on.  And to never, ever give up.

By my rough estimation, I have survived 220,000,000 heartbeats since that initial run I took with my wife over five years ago and felt the first hints of my cancer.  So just what is a guy to do that has survived an extra 220,000,000 heartbeats and counting? Well, he finishes what he started. In October, I completed my first “marathon” in Walla Walla, Washington.  For six weeks leading up to the marathon, the kids and I ran a set amount each day.  When added up, we ran a total of 25.2 miles.  Then on race day, we ran the final mile on the marathon course and cross the finishing line to complete our own marathon.  So in the end I will finally finish what I started five years ago, even if it is not in the way I had ever imagined it.

Thank you so much.