Earl.... 6/6/07 p.m.

Earl is doing as well as could be expected. His surgeon seems to think he is doing well and right on target with his progress so far. "Text book" he said today.

They are keeping close watch on his blood counts. Gave him potassium and magnesium today. He got insulin shots Monday and Tues evenings. Sugar is 168.... tested this minute. Don't know if he'll get more insulin. Guess we'll find out shortly. It was 190+ last night.

Earl's days for now consist of sitting in chair, nap, walking up/down the halls. He's getting pretty good at that already. Sitting in chair, nap, more walking. He wanted to shave today, but hasn't got that done yet. Maybe tomorrow. He's still pushing that pain pump when he has to move much. Doing his breathing exercise every hour. His throat is very sore from the tube down his throat. He'll be glad to get rid of that on Friday.

I'm not going to continue to bore you with Earl's activities for the next few days. Sitting in the chair and roaming the halls does not make exciting reading!! I'll be back when something monumental happens.... like when some of the tubes, catheter, IVs, etc. are gone. That will make his life a little more bearable!

Please keep up the prayers. Earl still has rough days ahead. He is so very sore. Coughing kills him. His voice is getting worse every day. The tube causes mucus to build up around it and is so hard for him to cough it up. He has been running low grade fever since yesterday afternoon. Hope he doesn't end up with pneumonia.

He just got insulin.... four units. Nurse said it wasn't much.

We've had reports that so many are calling Sandra, Mom and Kay to check on Earl. It means so much to know you care. Thank you one and all for your concern and prayers.

Praise to God that Earl's surgery went well and he is progressing as well as he is.

One day after surgery

Technology is great! Here I sit in Earl's room, updating this blog. Signal is "low" but think it will work ok.

Earl spent the night in ICU. Didn't get much sleep. Lot of commotion in the cubicle next to him. They were also checking on him thru the night. When the nurse called me around 8 a.m. they had him up sitting in a chair. Had helped him walk about 10 feet and back to the chair.

By the time I got to hosp around noon (visiting hrs 11 - 8 daily) they had moved him to a room. The phone number to him is 215-(deleted). Address should be (deleted).
He just got back into bed after sitting in a chair for over two hours. Had to have some help, but did ok.

Overall, I was glad to see him sitting up in the chair when I came in. He looks better than I expected. He still has the epidural and the pain button. Will have the tube in his nose to drain and deflate his stomach until Thursday or Friday. No liquids/food by mouth until the tube is out. Sponge on a stick to moisten mouth with water when needed.

He has been playing with the Solitaire game I brought this morning. Already beat Sol. Asked me to bring a couple of Smithsonian magazines from the car for him to read later. He's alert and seems to be feeling pretty good as long as he doesn't have to cough and move much.

After a short nap, he's been up and walked to the door of his room and back to sit in a chair again. About 60 ft. round trip! He'll probably be walking the hall in a day or so.

The covering over his incision came off this morning. The staples run from right below the breast bone to right below his navel. Funny.... the incision curves a circle around his navel. He'll have a cute curvy tail at the end of his scar!

He is up to 1000 and 1500 on the breathing gizmo. Don't know if that's good or not. I don't know what I could do....

Dr. Watson was just in and basically went over with Earl what he had told me yesterday. The medication he will be on for about a year is an antacid. There is something else he'll take for about a month, but neither of us can remember what that was! Guess we're going to have to start taking notes!!

Dr W said they have done six Whipples here already this week. Busy place! I found out yesterday, from reading some of the displays, that this was the very first cancer hospital. Started back in 1904, they been fighting cancer for over 100 years.

As Pat reported yesterday, it was a grand surprise to have Brother Cummings here with us. Such a blessing! I enjoyed our conversations while Earl was in surgery. It sure helped pass the time. "Thank you" Brother Glenn for taking the time, during your busy schedule, to make the trip. Thanks also, to the church for supporting him and allowing him to come. A special "thank you" to all who contributed to the financial gift Bro. Glenn brought to us. We love you and appreciate, so much, what you have done for us. We are so touched by your generosity and the love we feel from all of you. (Here I am.... crying again!) Thank you so much! We have such a wonderful church family, Sunday School Class and Pastor.

I also have a wonderful ETHRA family. I thank all of you for your love and support during this very difficult time. It's great to know you are all there praying and cheering us on.

We are so thankful, first to God who has been so good to us, and to everyone, everywhere, who have been praying for Earl and me. We know he has been on prayer lists all over the country. We can't forget Earl's clients either. You have been so generous with your prayers and patience in allowing extensions. Earl is already talking about getting back home and getting back to work!

Last, but dearest, is our families. We love you and appreciate your willingness to help with just anything that needs to be done. We love each and every one of you so very much. Just knowing you are there, if we need you, is such a comfort.

If I've forgotten to thank anyone, I apologize. Just know that we do appreciate what everyone has done. It is so humbling to really learn how much everyone cares.

And the news, yesterday, that Thomas Bright does not have cancer again is the most wonderful news to receive on the stressful day of Earl's surgery. He has been thru a very difficult month of tests and procedures. At least, we can stop worrying about that! (Thomas is married to my sister's daughter, Stacie. He has had three rounds of melanoma. It's been four years since his last surgery. Craig Carlson married them at MABC.)

I'm sorry I have rattled on so long with all this. I just have so much to be thankful for and probably not saying it very well. So, I'm going to hush for now and go look for something to eat. I missed lunch today!

With love and gratitude,
Lillian Trentham Lancaster

Update - Earl's Surgery - Fox Chase in PA

HURRAH!!! Earl came through surgery with flying colors. Only took 5 hours instead of the expected 6-8 hrs. According to doctor, he's doing very well, will be kept in ICU tonight and maybe thru tomorrow. Did not have to remove any of the stomach. The TUMOR IS COMPLETELY OUT!!! He will have a tube down his nose until Friday, then he may be put on liquids only. He has a drain tube also, but doctor says when Earl goes home, he will have no tubes. He will have to be taught to eat all over again, kind of like a child. He will be on pills and medications for about a year and then taken completely off. He will probably have chemo and some radiation, this is expected due to the aggressvie kind of cancer. But things went amazingly well and we hope for the best.

Great suprise and gift, Reverend Cummings came in this morning, early, and has been with them all day. This was a great joy for the family due to the fact Lillian & Earl were having to go through this day by themselves. Their immediate family could not be there, so Rev. Cummings was a blessing beyond our expectations. The gifts and prayers from our church families, Lil's ETHRA families and all our family and friends have helped beyond any doubt to get us to where we are. We thank you all from the bottom of our hearts. Keep those prayers coming!

This is a short update, but wanted all to know Earl's doing great at this time.

This post by Lil's sister, Pat Carver

Arrived in Philly

We arrived at the hotel in Philly about 1 a.m. Sunday. We got to the North side of Washington right about dark. We realized, after looking at a map at the rest area, that we were only about 120 miles from Philly. Earl decided he would rather go on and not have to roll out so early Sunday morning.

When we get up in the morning, all we'll have to do is pack up, get him a "light" breakfast and be at the hospital by 10:30 a.m. to check in. Then, after I get him settled, I'll be off to find the apt and unload the car "again". Guess we should have packed a small bag of essentials for tonight, so we wouldn't have to unload all our bags. As is said.... hind site is 20-20! We've kept the luggage cart in our room, so we won't have to waste time hunting for one in the morning. They'll never know where it is tonight!

We're thankful for the safe trip. I thought drivers at home were wild and crazy. Hopping lanes and cutting in front of people must be required up here! Everyone drives about 20 miles over the limit. I drove all the way and it was move on or get run over. It felt like I had competed in the Indy 500 by the time we got here!!

Now, I AM READY for some sack time!
Lillian

Of all things..................

When I came in from work this afternoon, Earl said he was chilling. I felt of him. He was HOT! Took his temp..... it was 102.2 or 102.4 Immediately gave him some Tylenol. It's now 8:45 and he seems somewhat cooler. Will give more meds around 9:30. If he is still running fever in the morning...... he says he was instructed to call the hospital if he gets sick.

This is all we need. We've fought so hard to get to this point! The surgeon only operates on Monday and Tuesdays. No telling how long it will delay surgery, if he can't go tomorrow.

Pray, pray, pray..... he needs to be better in the morning!

More good news.... some not so good

We got comfirmation today that we are getting one of the apts. about three blocks from the hospital. It's not free, but less than hotel/motel.

Found out we have to be in admitting by 10:30-10:45 Sunday a.m. instead of some time in the afternoon. So, we'll have to move out earlier and travel longer Saturday in order to get on in the Philly on time.

Earl was told today that the surgery will last 6-8 hours. After he is admitted Sunday, he will be hooked up to IV and they will begin process to clean him out. I'm sure he is looking forward to that!!

This Vanderbilt University link tells more detail of what life may be like for Earl in the weeks/months following surgery.
Home care instructions.

Thank you again for all the prayers. They sure have been working. Everything is falling into place and this seems meant to be. Please keep up the prayers. He is going to need them for a long time. Me, too!

My love and gratitude to everyone.
Lillian

Talk about cutting it close!!

We finally have gotten some good news!

Great news! Prayers are answered!

Earl was told late last week that Fox Chase Cancer Center (FCCC) was in the process of negotiating a contract with our CIGNA insurance to possibly go into effect on 6/1/07. Insurance lady from FCCC called Earl today and told him a contract has been signed and the hospital bill will be paid "in-network".

We don't know exactly what this means other than the hospital has signed a contract. We don't know if the surgeon does his own billing and would need to be under contract. Then, there is the anesthesthiologist and who knows what/who else.

We have received so many EOBs from CIGNA for his hospital stay in April. One of the doctors who did one of the procedures on Earl at St. Mary's (Knoxville) was "out of network" and we'll have a larger bill to pay on that. So, depending on who all is included in this new contract.... we could still have some bills to pay. But, the great part about this is that now we won't have to worry about the HUGE hospital bill for 10-14 days. We can face the small bills when the time comes.

This is such a relief!! God is good!

"Thank You"

We want to express, again, our thanks for all your prayers and contacts. Whatever form your contacts .... comments on this blog, emails, phone calls, cards... each and every one are greatly appreciated. Family, friends, co-workers, and our church family.... you know who you are... are all being so supportive. Thank you for everything!

Update on travel plans, insurance, surgery

I've been putting off updating.... hoping we were going to have some definite news. As things stand right now, we still do not have things worked out financially. The two local doctors have not come thru with the letters they said they would write confirming we were told it is inoperable here. It's been over a week and still no letters. The insurance case manager asked us to get statements, so she could present our case to the insurance doctors in an effort to get benefits paid as if it were in-network. We'll be contacting these local doctors again tomorrow.

We did learn this week that the estimated cost of the surgery is around $120,000. If the insurance only pays 60%, this will leave about $48,000 for us to pay. IF.... the insurance were to agree to pay as if it's in-network, I assume we would be responsible for whatever the insurance does not pay. We all know the insurance does not pay very much in most cases. So, we have no idea what our responsibility will be or if the hospital will accept payments. Website says not. We're trusting things will work out.

We've decided to drive up. It's about 12 hr trip, but just need to take a lot of "stuff" to be gone almost three weeks. We'll leave Sat. June 2nd. splitting the trip into two days. Earl is to check into the hospital some time Sunday.

See the Whipple precedure (Earl's surgery)

Photos of before and after:

Whipple procedure

What's happening......

Lodging assistant called from Philly yesterday with info regarding possibility of an apartment about three blocks (walking distance, if I feel safe) from the hospital. This is first come, first serve. Once a family is in an apt. they are not asked to vacate, if their stay needs to be extended for any reason. No guarantee one will be available when we need it. Contact will be made on Friday before Earl's Monday surgery. If an apt. is available, I can get it on Monday or Tues. as I can manage to move belongings from hotel around the surgery schedule. Earl will be checking into the hospital on June 3rd.

While Earl was in St. Mary's, a surgeon told us he considered Earl's cancer inoperable. Surgeon's nurse finally returned our calls today. We got a faxed copy of doctor's CONSULTATION REPORT (Headed up with St. Mary's Medical Center name and address.) This was dictated the day before we got the official confirmation on April 6th that the biopsy had tested positive for cancer.

• Doctor's "impression" states: Probably locally advanced carcinoma of the head of the pancreas which is essentially inoperable and unresectable.

Knoxville surgeon is also going to dictate a letter that should provide the inoperable statement we need to give to our insurance in an effort to get better benefits. Our Oncology Case Manager will submit these two documents to the insurance doctors in an effort to get approval for benefits to be paid at 80% instead of the current 50% out of network rate.

So, everyone pray very hard that the insurance doctors will be in an agreeable mood to approve our request. Otherwise, it is going to be very difficult financially, since Fox Chase states payment must be made at time of service.

I am encouraged that we seem to be making some headway in getting some of our bumps smoothed out.

Surgery scheduled

Surgery has been scheduled for June 4th. Earl will be in the hospital for 10-14 days and another week in convalescence. Time varies per patient, so we'll be up there for 2-1/2 to 3 weeks.

Dr. will do resection called the Whipple procedure. Hospital is sending information packet. Hope there will be information about the whole procedure.

Happy Mother's Day

Pa. Doctor out of office

Earl called Philly yesterday. Talked to Dr. Watson's nurse. Dr. W is out of the office until Monday. They did get the MRI we mailed. So.... we're still waiting!

In the mean time.... Earl is feeling better. Actually got out and walked up/down the road a couple of times yesterday. Says he is getting his strength back. Nine days in the hospital and being put to sleep three days in a row really zapped him.

This waiting is getting to me! I feel like somebody should be doing SOMETHING!

No news!

No news yet from Pa. Doctor. We're just waiting.....

Earl went to church today.....

Earl decided he was strong enough to go to church this morning. He did play his trumpet during the music service. First time he had played it since March 11th (I think).

He was happy to see everyone. All the greetings and words of encouragement work wonders! He was glad he made the effort to go, even though he was very tired afterward.

He has been on the internet for a little while, but is leaning back.... asleep in his chair right now! The little cat naps help keep him going! :-)

MRI of Liver

Earl had the MRI done Friday morning. Later Friday, picked up a CD with the MRI to send to Dr. Watson in Philadelphia. It was mailed this morning via priority mail, which should get it there on Monday.

We met with Dr. Allan Grossman Friday afternoon to discuss oncology treatments. He will administer chemo as instructed by Dr. Watson.

It has been 14 years this month since I completed my year of chemo with Dr. Grossman. He and his nurse both remembered me... after all these years!

Next post will likely be after we hear from Dr. Watson on Monday or Tuesday.

Flax Oil & Dr Johanna Budwig (Bonnie T Myers)

Link to diet: Flax Oil Diet - Budwig

Her book is available on Amazon and in some health food stores. The price in health food stores if your can find them is approximately $3.50

Copied from an email from Bonnie:

There is ample documentation regarding Dr.Johanna Budwig, a German doctor and chemist, who learned that terminal cancer patients were all deficient in certain elements, which she found to be in flax oil mixed with cottage cheese. She is known to have taken terminal cancer patients with only hours to live from the hospital whose lives were saved.

In 1991 A friend of mine in stage four (4) cancer given four months to live used this diet and is still alive.

Since that time he has record of 65 others, to whom he spread the word, whose lives have been spared by using this diet. So glad to be alive for years he sent out cassette tapes ( I have a copy) at his own expense telling the world about the flax oil and cottage cheese.

The oil must be mixed thoroughly with the cottage cheese. One with pancreatic cancer took six tablespoons per day, which is a lot of flax oil and got well.

I use Barlean's, from flax grown in Canada. I have had at least seven episodes of cancer since 1958, two major surgeries, colon and radical mastectomy among them. And highly recommend the flax oil and cottage cheese.

Dr. Budwig has been nominated perhaps six times for Nobel Peace prize, but has been blackballed in every country because she refuses to allow Doctors to make billions of dollars from it.

The flax oil with cottage cheese is now being used for terminal cases other than cancer but do not have statistics yet on that. I highly recommend it along with much of the diet, for all terminal cases! What do they have to loose?. It puts a balance on the immune system Do not know of any side effects. One of my "patient's" scheduled for radiation and chemo got an increase in his white cell count in only three weeks!

Just continuing to spread the word of this life saving food supplement. Bonnie Trentham Myers

Thank you!

Thank you to all for stopping in and catching up on what's happening with Earl. We appreciate your prayers & comments.... the cards & flowers.... emails and phone calls. Every contact helps keep us going... picks us up when we get down!
All I can say is THANK YOU and WE LOVE YOU ALL!
Lillian

News from Philly

Good News! Prayers are being answered!

#1: Results of blood work for CA19-9 last Thursday came back today. It is now 309.6. It was 572 on April 3rd. It's not 200, but Dr is pleased.

#2: CT Scan from March 23 shows there is no involvement with the main blood supply that runs thru the pancreas near where the tumor is located. This was a huge concern.

The above were the two things that would have made Earl's cancer inoperable. If the number had not dropped and the tumor had spread to involve the blood supply.

Recent scans show there is "something" in the liver. We know that has been there for several years. Former Dr. had run CTs and kept watch on it. Always said it was not anything to be concerned about. Philly radiologist wants to do an MRI, just to make sure it is "nothing".

Overall, Dr. Watson (Philly surgeon) said he was pleased with what he is seeing. Stated that if not for the liver thing, he would have Earl up for surgery asap.

Dr. Watson faxing orders for the MRI. He will be out of his office rest of this week returning next Monday. As soon as they get results of MRI and confirm that situation, he is talking about getting Earl back to Philly for surgery!!

We have appt. with Oncologist in Knoxville on Friday, May 4th @ 3:15 p.m. He is the same doctor who did my year of chemo when I had colon cancer. Will be good to see him again.

MRI is scheduled for 9:30 a.m. on Friday.

Thank you for all your prayers, emails, cards, blog comments & phone calls. Every contact is just great. Thank you for keeping in touch.

Please continue to remember us as MRI is done, plans progress, and we take up the battle with the insurance company to try to get the out of network surgery done "in-network".

Lillian