Proximal-type Epitheliod Sarcoma

So much has happened in the past week.  I wish I could write every day because there are so many emotions and conversations and phone calls but it's a miracle that I have 20 minutes to write once a week, it is so busy around here.

After I posted last Sunday, Matt and I had time in the evening to spend together and do a little research online.  At that point we did not have a definitive diagnosis.  We only knew that the pathologist's best guess was epitheliod sarcoma.  Let me tell you, doing research online on "epitheliod sarcoma" is not a pleasurable experience.  The disease is rare, less than 1% of all cancers.  It is also aggressive.  65% mortality rates after 10 years.  In males, it is worse.  (Check: Matt is a male).  Evidence of necrosis indicates worse disease (check).  Size of tumor greater than 2 cm (check).  Area of tumor, proximally meaning at the trunk of the body and not at the extremities, indicates worse prognosis (check).  It appeared as though all of the indicators that would give Matt a worse prognosis were going against him.

We cried and we talked and we wondered how and why!  But then we remembered that God is in control.  Each of our lives are in God's hands.  We will experience what is necessary for us to be comfortable in His presence again.  We prayed together and Matt's answer to prayer was the scripture coming into his mind, "Be still.  And know that I am God."  That brought me comfort because what I was feeling after the prayer was heartache.  I could physically feel my heart breaking.  I could feel the pain in my heart that I felt when my parents were divorcing.  But through talk and through tears, I too felt comforted that Matt's life was in God's caring hands.

On Monday he had his CT scans.  The two giant bottles of barium he had to drink weren't too bad.  We had the day together to take care of home and family.  He and I also stopped at the benefits office of his school district where he works.  The administrator explained how his 64 accumulated sick days need to be used up before applying for his short-term disability coverage if his cancer treatment required him to miss work.  We just signed up for that a couple of years ago because I had read Dave Ramsey recommended it.  I'm glad we did.

On Monday night we visited with a family in our ward who have become our close friends.  Her dad had cancer when she was a teenager.  She spoke about his experience with the disease and her experience as a child dealing with it.  We were glad to be armed with more information but overall it kind of made us feel sad.  We realized that death really could be a result of this disease.

On Tuesday, he actually had three doctor appointments.  The first was with his surgeon who said that his wound was healing well and that the CT scans showed no evidence of metastasis!  That was good news!  We raced to his primary care physician's office next to check in with her.  She just wanted to establish her relationship with him and offer her services in any way he needed.  All of his records will be in her office.  Then we drove back just in time to oncology.

We met with Dr. A.J. who unfortunately explained that the radiology report that had been sent to Mayo Clinic had not come back yet with a definitive diagnosis.  He couldn't offer us much information specific to Matt's case except that it was a kind of epitheliod sarcoma but there are many kinds of this sarcoma.  They react differently to cancer treatment.  Chemotherapy is usually not effective.  Sometimes radiation doesn't work either.  He answered our questions and explained things to us clearly but Matt came out feeling like he was downplaying the problem.  I felt really uncomfortable with the office itself.  It was rundown and dirty.  He did tell us that the surgeon was not willing to go back in to try to get all of the cancer out of the primary tumor site.  He took out all that the could see and would not know what else to surgically remove.  The greatest success with epitheliod sarcomas is to be sure and get rid of the cancer with wide, clear margins during surgery.  His margins were not clean.  There are still cancer cells at the primary site.

More waiting.  But at least Matt could go back to work on Wednesday.  I woke up on Wednesday wondering how in the world I was supposed to go back to normalcy.  I'm just supposed to do my normal routine now?!  I couldn't even remember what we were doing for homeschool a few weeks earlier.  It's like I went through my day like this:  "We have books to return to the library today.  Matt has cancer.  The baby needs her diaper changed.  I'll change it while thinking about the fact that Matt has been diagnosed with cancer!  The kids will be hungry for a snack soon.  I'll let them find a snack.  Matt has cancer."  It couldn't sink in for some reason.  I was just trying to process it but it just didn't make any sense.  Why does he have cancer?!  That day we filled in our homeschool records for the month of September and it kind of got my mind back into our routine.

Thursday morning we were actually doing school when I got a phone call from an emotional Matt.  I let the kids draw/color their maps on their own while he related that Dr. A.J. had gotten the pathology report from the Mayo Clinic back.  He was confirmed with a diagnosis of "proximal-type epitheliod sarcoma."  We were glad to have a definitive diagnosis (a friend of ours is stuck dealing with a kind of cancer that they don't even know about and can't diagnose!).  The bad news is that this proximal type of ES is even worse than just ES.  It is a more aggressive and more recurring than ES.  Proximal refers to the fact that the tumor was located on the trunk of the body.

Any kind of sarcoma is a diagnosis that a patient will have to live with for the rest of his/her life.  Matt will probably be monitored very closely to watch for recurrence which is very common.  This cancer is not a death sentence.  But it has opened our eyes up to the fact that fatality is possible.  We are spending time this weekend discussing what needs to be done in case of the worst.  We are checking on policies and writing a will.  We are crying and talking a lot with friends about their experiences.  I think it is finally sinking in.

But my plan is to get all of the death talk/plans over with now and then set them aside.  Matt and I are hopeful.  We are prayerful.  We are close.  We are studying lifestyle changes which may help prevent further cancer growth.  We are getting a second opinion from a sarcoma specialist at the University of Kansas.  We are fasting today along with family members and friends in a united effort to pray for a miracle and also to learn to submit to His will and sense His hand in this trial.