Cured At Last

Last night at 5:45 PM, Ernie succumbed to the ravages of cancer.  He loved life and fought valiantly until the end.  I do not know what I will do without him.  Rest in peace my darling.  You are gone from my sight but forever in my heart. 

Obituary

Ernest James Fackelman, 67, beloved husband of Cynthia Skaar, died peacefully at home on April 2, 2015 after a four year battle with cancer.  Ernie grew up in Elkhart, Indiana.   He had an idyllic childhood, fishing, hunting rabbits, watching the latest Westerns at the Elco Theater and making explosives, zip guns and rockets in the basement with his big brother. 

Ernie attended St. Thomas the Apostle Catholic School where he had a reputation as an exuberant student who enjoyed life to its fullest, regularly securing him “hall time” and more than a few raps on the knuckles by the Sisters.  During these years, he amassed a group of buddies that remain his friends to this day.  Ernie advanced to West Side Middle School, setting the school record for running the hurdles—a record that stood for more than 30 years.  He graduated from Elkhart High School in 1965.  During high school he gave up sports to work so he could buy his first car and the one he always loved the most—his midnight blue 1930 Model A Ford. 

Ernie went on to attend Purdue University, earning a Bachelor of Science Degree in Economics with Distinction and Honors and a Master of Science Degree in Business.    Upon graduation, he was drafted into the U.S. Army.  He distinguished himself in basic training and was selected for Jungle School in Panama and then sent to Viet Nam, joining a reconnaissance platoon in the 25^th infantry division.   While in Viet Nam he was awarded the Bronze Star and the Army Commendation Medal for Valor in Combat.

After Ernie was discharged, he began his business career starting at Hershey Foods and then went on to The Pillsbury Company in Minneapolis where he met his wife, Cyndi.  In 1978, Ernie moved to Winston-Salem to join R. J. Reynolds Tobacco where he was Vice President of Business Information and Analysis.  After 20 years, he took early retirement and began a consulting company with his wife.  He closed his business in 2011 to begin his fight with cancer. 

Ernie loved Winston-Salem and involved himself in the community. He served on the local United Way Board for five years followed by seven years on the Board of the United Way of North Carolina, retiring as Board Chair.   At his death, he was a fundraising committee member and staunch advocate of the Larry Leon Hamlin and Sylvia Sprinkle-Hamlin/Winston-Salem Urban League Endowed Scholarship at the University of North Carolina School of the Arts—a scholarship fund for young artists-of-color--and a member of St. Leo the Great Catholic Church.  He was also an enthusiastic golfer, historian, collector and traveler and loved spending time at his Blue Ridge Mountain cabin. 

Ernie is survived by his wife of 32 years, Cyndi, and his brother, Thomas Fackelman (Kathy) of West Lafayette, Indiana.  He was preceded in death by his parents, Thomas and Evelyn Fackelman. 

The family will receive friends on April 10 from 5 to 7 PM at Salem Funeral Home at 2599 Reynolda Road.  A memorial service will be held on April 11, at 1 o’clock PM at St Leo the Great Catholic Church in Winston Salem and the weekend of July 10 in Elkhart, Indiana. 

The family wishes to thank the staffs of Johns Hopkins Scleroderma and Kimel Cancer Centers, Dr. Rich Daniel at University Dental and the staff of the Hospice & Palliative Care Center for the extraordinary care they gave to Ernie and also Father Brian Cook and the many relatives, friends and neighbors who helped support him during this difficult time. 
 

The hardest blog of all

This is the blog that I hoped I would never have to write.  Ernie’s symptoms have been progressing rapidly despite the chemotherapy.  Because of this, the oncologist ordered another scan.  Unfortunately, the scan showed that the tumors in his throat and lymph nodes are all growing. 

Effective Sunday, we withdrew from chemotherapy and entered hospice care.  Right now, Ernie is at the Kate B Reynolds Hospice Home where they are working on pain and symptom management.   In two or three days, when these things are under control, we will return home for the duration.  We are hoping for some good days when Ernie could receive visitors but we will have to play that by ear. 

My apologies to all of you who have written, called, emailed and texted.  Ernie’s symptoms have progressed so rapidly that we have struggled to keep up.  We are so grateful your concern and attention.  It helps us tremendously to know that we are not in this alone. 

Here Comes The Bride

Ms. Cynthia J. Skaar Weds Mr.  Ernest J. Fackelman (again) in Catholic Ceremony

 Ms. Cynthia J. Skaar and Mr. Ernest J. Fackelman were united in marriage in a Catholic ceremony on Saturday, March 21, 2015 at half past five o'clock in the afternoon at the Cancer Center, Wake Forest Baptist Medical Center, room 637 in Winston-Salem, NC. The private ceremony was officiated by Father Brian Cook of St. Leo the Great Catholic Church.

The bride wore a chartreuse V-neck sweater with matching pashmina shawl and black slacks, adorned with a silk flower wrist corsage (no real flowers allowed in the oncology floor of the cancer center).   The groom wore his best flannel pajamas and white cotton robe.  His boutonniere matched the bride’s wrist corsage.  

Following the ceremony, the couple departed for home where they plan to spend the rest of their lives together.   It was the most joyful of days and made them both feel young again. 

Final Plans

We have now heard from the tumor boards at Wake Forest and John’s Hopkins.  Both are recommending a 3 drug chemo cocktail very similar to the one used to treat Ernie initially.   This combo is supposedly well tolerated with less toxicity than most other combinations. 

We will start Wednesday, December 24,  at Wake Forest's new chemo center in Clemmons.  Ernie will continue to receive chemo weekly for 6 weeks then Wake Forest will repeat the scans to see if the drugs have been effective.  If not, the cocktail will be changed to something stronger for another 6 weeks, etc.  This is a standard-type protocol and is estimated to provide 10 more months of life--a definite improvement over the estimate of "weeks or months" that we were given if we do nothing.  The chemo should also eliminate Ernie's very sore throat and some of the swelling in his face and throat, which could enable him to talk and even swallow food again! 

The new potential wonder treatment is immunotherapy drugs.  These drugs are thought to add significantly to the expected life span and even to be potentially curative.  Hopkins is doing several clinical trials with these drugs.  However, because of Ernie's scleroderma, he is not eligible for these trials.  We asked if they would allow him to follow the protocol but not be in the clinical trial—a practice we observed when we were treated the first time.  The Medical Oncologist who is now in charge of Ernie's cancer care at Hopkins, said that these drugs are "contraindicated in cases of scleroderma because they rev up the immune system" so she could not recommend this approach for him.  

 

Of course, Ernie is not one to take "no" for an answer.  He has already contacted his Scleroderma Doctor for a second opinion.  She is a very practical doctor who understands that having scleroderma only matters if you are alive.  She promised to speak to the Medical Oncologist directly to see if there were any of these drugs she would feel comfortable with.  So we will continue to pray that Hopkins will eventually give Ernie the immunotherapy.  But everyone has been clear that there is no proven cure for Ernie's condition.   It is just a matter of time. 

 

So with this blog, we are signing off to devote our energies to the big fight.  Ten months is an average--our doctor has patients that are alive after 1 and 2 years--and Ernie is determined to beat the odds as well.

 

If you would like to "talk" to him, you can text him (336-407-3800) or email him at fackelmn@ix.netcom.com. 

 

Thanks again for all of your help and support.  You have given us the energy to carry on.   

 

Or Not

I'm sure by now everyone is wondering why it has been so long since the last blog post.  Truth be known, we got the results of Ernie's scans on Wednesday evening.  It has taken us this long to digest the results.

 

 Ernie’s scans show that the tumor at the base of his tongue is quite large (1 ½ to 2 inches).  Nothing showed on the scan he had in May so our local ENT doctor is assuming the cancer is now quite aggressive.  Also, the scans showed activity in both the left lymph nodes (it had been there before but surgery supposedly removed it all) and right lymph nodes—a brand new occurrence.  Finally, there were small lesions in his lungs that might be cancer—but could also be aspiration pneumonia. 

 

Because of the extent of the cancer, surgery is not an option as far as Wake Forest Baptist Medical Center is concerned.  Also, since Ernie has already had his life time allotment of radiation, that is out too.  That leaves chemo—which is palliative not curative. 

We will meet with the local oncologist on Wednesday but, if he tells us this chemo will be like the first round, we will probably decline as Ernie felt so bad during treatment.  The scans have also been sent to Johns Hopkins for their opinion.  There is still a possibility that they can identify  a clinical trial that Ernie will qualify for.    So now we wait for final recommendations and then decision time.  All that will happen hopefully by Friday.  It will be a long week. 

 

 

Plugged

We have been taking it easy, just trying to get to Wednesday and complete the scans.  Most of our time has been spent on symptom management.

A trach is essentially a second nose.  If your nose is running all the time, it is very uncomfortable.  If things get too dry, that can cause problems too.

After stretching Ernies esophagus, the ENT doctor felt Ernie had way too many secretions.  So he started Ernie on a medicine to dry him out.  This seemed like a blessing at first.  Far less "nose" blowing means far more sleep.  However, things took a turn for the worse this morning.

Not long after breakfast, Ernie felt he could not get his breath.  Since the ER is closer than Urgent Care, off we went.  Long story (4 hours) short, Ernie had dried "crud" in his airway (aka plugs).

The solution to plugs is "saline bullets."  We had recently gotten a supply but they came without instructions.  So, the nurse demonstrated.  Basically, you pour sterile salt water down the trach tube into your lungs!  Imagine jumping in the ocean and swallowing at the wrong time.  The idea is to induce coughing.  Works like a charm but not the most pleasant experience. (WHO THINKS OF THESE THINGS?)  It did make Ern feel a whole lot better after he got over it.

Now we can refocus on tomorrow.

Not Time Yet

After three doctors suggested that we speak with The Hospice and Palliative Care Center, we set an appointment for yesterday.  Ernie was in his workshop when the nurse arrived to sign us up.  Not too far into the conversation, she suggested that perhaps calling in Hospice at this point was premature. 

The focus of Hospice is symptom management--something that Ernie could use--in the comfort of your own home.  However, as with most things related to health care, the government calls the shots and the rules are complicated. 

To get Hospice care, you must sign over your treatment to them.  The Hospice doctors then determine your meds and care.  They only provide palliative care--no curative or life-saving measures. 

You can revoke your Hospice treatment at any time, but you must do so before seeking life-saving measures. This means, in the case of emergency, you have to call Hospice and revoke that treatment before you can call 911 or go to the emergency room.  If you don't intend to call 911, this is not an issue but we are definitely not there yet. 

The nurse told Ernie he did not look like her typical patient.  Generally her patients are not well enough to be in their workshops.  Also, since Ernie has his PET/CT scans next Wednesday, if we signed up we would just have to revoke for the test (since it is for curative purposes) and then sign up again after the test.  The nurse thought that the lymphedema massages would also qualify as seeking treatment, so we would have to revoke before each of his twice weekly massages as well. 

While it would be nice to have nurses and medicine come to us instead of running out every day, we are still very capable of doing these things.   So, we elected to continue without Hospice.  Ernie's Internist will have to provide symptom management for now.