The Jelly Belly Journal    11/15/07

For those who don’t know, during surgery for hernia repair on October 3rd, doctors discovered a rare form of cancer in my abdomen called Pseudomyxoma Peritonei (PMP), otherwise known as “Jelly Belly” (due to a gelatinous substance that fills the abdomen).  A tumor was found and removed along with my appendix to which it was attached. There was also a substantial amount of yellow “jelly”, approximately 2 liters.  Now I find myself in the ranks of the truly rare.  Apparently only a few thousand people in the US are diagnosed with this type of cancer each year.  There are only a couple dozen doctors who have experience with PMP and have successfully treated it.

Today, Nov. 15, Sharon and I have been to Pittsburgh to see one of those doctors.  The University of Pittsburgh Medical Center (UPMC) is a research facility that treats a large percentage of patients with PMP and other similar abdominal cancers.  Dr. Holtzman, a young man who has performed several hundred cancer surgeries, talked with Sharon and me about my situation.

After looking at my medical records and pathology reports, he assured us that my condition was about as positive as it could be, and still have PMP.  PMP does not behave like most cancers.  It is more of an annoyance than a serious life threatening disease if treated properly, because it never goes away and has to be constantly monitored.  However, if left untreated, it is 100% fatal.  We were told of one patient who has lived with PMP for the past 27 years, having undergone 5 surgeries and frequent CT scans.  

Treatment involves a large incision in the abdomen by which the oncologist looks for tumors.  They could be anywhere, on any organ within the abdomen.  Once the tumors are removed, if there are any, a heated chemo solution is poured into the open abdominal cavity and allowed to soak for nearly 2 hours, killing any residual microscopic cancer cells.  The solution is then removed and the incision is sewn up.  The typical length of this surgery is 8-10 hours.  Sometimes the spleen, or parts of the large intestine and rectum have to be removed.  A normal hospital stay is 14 days and the cost of this procedure is in the hundreds of thousands of dollars.

That brings up another issue which complicates my situation.  I have no health insurance.  Thankfully, a good friend signed us up with a Christian health care organization, Samaritan Ministries, about 6 months ago.  Thus far, our medical costs have been over $20,000 and we have only had to pay a $300.00 “deductible”.  We prefer not to utilize the welfare system for various reasons, and are hoping Samaritan Ministries will be able to help us significantly.  We have already been assured that our bills so far will be published so members of Samaritan Ministries will be aware of our need and help us financially.  However, the bills for the next phase of treatment will be catastrophic.

Today, we talked to Linda, a social worker at UPMC, who told us of a special program they have developed for unconventional people like ourselves who either don’t have insurance, can’t get insurance, or can’t afford it, and do not want to utilize “the system.”  It may be possible for us to receive a significant discount from UPMC if we qualify.  So, now we have a stack of forms to fill out (once again), but it will hopefully be worth the effort.

Dr. Holtzman assured us that we do not need to do anything immediately.  Rather, we should wait until after the holidays and schedule surgery sometime in January.  Driving three hours one way from Pine Grove Mills to Pittsburgh during January does not sound like a fun time.  Sharon will probably stay in P’bg much of the time in one of the special housing facilities that are made available for family members of patients who have an extended stay.  Driving back and forth, at $3.09/gallon, is rather pricey in itself.  So that’s sort of where we stand at the moment.

One other tidbit: My local oncologist is contacting another doctor (Dr. Esquivel) in Baltimore regarding my case, just to get another set of eyeballs to look at this.  However, UPMC does more of these kinds of surgery than any other facility in the US, and they are already talking about serious discounts.  Baltimore told us we would need a $62,000 PRE-payment! before St. Agnes Hospital would accept me as a patient.  So it’s off to Pittsburgh we go.  "Neither snow, nor rain, nor heat, nor gloom of night stays this less-than-courageous patient from the swift completion of his appointments."

I want to thank the MANY people who have prayed, added me to their church prayer list, sent cards, written notes, slipped money into my hand, emailed, called, stopped by, and given such kind expressions of their love and concern.  Mercy is a wonderful thing.  I wish I weren’t in need of so much of it.  But if the truth were known, we all need far more than we ever realize.  It’s like a quote I heard this morning: “I never pray unless I’m in trouble.  But I’m in trouble all the time!  So I always pray.”  Seems we’re always in some form of trouble.

In the kind providence of God, I have been preaching through Hebrews 12 for several weeks.  Verse 3 has become quite precious:

“For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls.”

The context is one of trouble and hardship because of persecution.  But one does not need to suffer persecution in order to become weary and discouraged of soul.  The prospect of having to endure all of the trouble I’ve been talking about tends toward a serious weariness of soul.  

But the antidote for such weariness is to consider, to meditate upon the Lord Jesus and His suffering from sinners against Himself.  THAT was persecution.  THAT was trouble.  THAT was suffering.  And all of THAT was for me.  What I am, and will be going through, is less than microscopic in comparison to the infinite suffering of Christ for my sake.  So, take comfort, Soul!  Not only does my suffering not compare, but it is also a suffering from the hand of my Heavenly Father.  The text refers to this affliction as chastening, correction, and discipline.  It all comes from the hand of a loving and perfect Father.

"For whom the Lord loves He chastens, and scourges every son whom He receives."  Hebrews 12:6

It is not pleasant.  But it is also not crucifixion!  It is the cross that keeps everything in the Christian life in the proper perspective.  As I look to Jesus and consider Him in His suffering, I am encouraged in my own troubles, and prevented from losing heart or becoming weary and discouraged of soul.  He is an all-sufficient Savior for every need I have.

That’s the news from Pine Grove Mills.  I plan to update this page fairly infrequently, since new news doesn’t come often.  But when it does come, there seems to be a lot of it.  So check back again at a later date.

Grace and peace,

Keith (and Sharon)

Romans 8:28

Jelly Belly Journal update--12/12/07