Home John Mitchell Weigel – Illness History

These e-mails document John's illness in 2009 - 2010. They were written by his wife, Mary Dolores Crowley Weigel, with one exception, a note from John (18 Aug 2010 00:23:02). Most were sent to a general distribution list, but a few were to smaller groups or individuals; their Subject and Date look like this. A few were replies to earlier e-mails.

Subject: John and surgery

Date: Sat, 19 Sep 2009 12:20:41 EDT

About two weeks ago John thought he was coming down with the flu.

Last Saturday I noticed he was turning yellow so we went to Emergicare. They ran blood tests and John made an appt to see his doctor on Tuesday. They, of course, tested for hepatitis A through E and that was all negative.

His GGT; however, which is the liver count was high. Normal is 1-25 and John's count was 1538. As the PA said, it is grossly high. He went in for an ultrasound and another blood test today. The technician told me that one thing I was seeing on the scan was a Kidney Cyst but, that is apparently not what is causing the problem.

The PA called around 7:00 Thursday to say there are several stones blocking the bile ducts to the liver. She is bumping it up to the Doctor who will look at the blood test and call John to schedule surgery.

The biggest problem is itching - - apparently the body's way of "getting rid of" the extra bile in the system is causing him to itch terribly and he can't take any medication due to the fact that the liver usually processes medicines.

Hopefully, we'll be able to get him in for surgery fairly soon and he can start recovering quickly.

MaryDee Weigel

Subject: The latest on John W

Date: Thu, 15 Oct 2009 22:41:06 EDT

Well, a lot has happened since my last email. When we saw the doctor she still wanted some additional tests done. She wanted another scope test done known as "spyglass" which is a more detailed scope that can direct you to more specific areas to biopsy. This is a fairly new test and usually only medical university hospitals have the equipment. We had to go up to Denver to the University of Colorado Medical Center and that occurred on Tuesday.

Shortly after they set the IV John started getting very hot. I began to take his covers off and he went back, started to gasp, and eyes rolled back. I grabbed nurses and they laid him back, got oxygen on him and came with the crash cart. He then "came back" around and he was fine. Apparently just a nervous reaction to the IV, strange location, etc. Well, once we both got our hearts back to normal, they took him in for a 2-2.5 hour procedure.

He was on the table for 4 hours and when they called me back they told me they were going to keep him overnight. They did multiple balloons to expand certain areas and made a 2 mm tear in the liver duct. they took out the original stent and put in two new ones, one on each side of the tear. The purpose is to help the liver drain better and allow the tear to heal.

Medical report indicated a lot of stones in the gall bladder (so we'll probably hear that will have to come out) and several suspicious areas biopsied including a mass in the liver.

John sees the doctor on Wednesday next week. so I'll let you know the continuing saga.

MaryDee

Subject: John and his liver epic...

Date: Sun, 25 Oct 2009 12:47:15 EDT

John saw his primary doctor on Wednesday - unfortunately I was not able to go with him so this information is somewhat 3rd hand...

Not all the tests from the Denver trip are back yet - those that are have come back negative (yeah!) She did want to do a liver biopsy which we had done on Thursday last week. This was just topical numbing and a quick needle into the liver with no complications or unexpected twists this time (yeah!) John did react a bit to having the needle thing so they kept him for about 1.5 hours after the procedure

our next visit to the doctor is November 2 where we hope to have all test results back.

I realized in reading my last email that I mentioned the gall stones but John didn't mention anything from his visit with the doctor so I'll try to get more information regarding that. One thing the Denver doctor indicated was the areas in the liver that were damaged appear to be improving which would not be the case if he had PSC (yeah!).

Right now it appears that if everything comes back negative the only thing they know for sure is there was a blockage - unknown reason. If that is all there is, he will likely need a permanent stent which would have to be replaced in six weeks (because the current two are only temporary) and then probably replaced every 6 months for the remainder of his life.

I'll keep you posted. MaryDee

Subject: We're not done yet...

Date: Mon, 2 Nov 2009 20:50:39 EST

We saw the doctor today and all the tests are back. First, the good news...

All the tests came back as benign and/or negative. They do not believe there is any cancer, they believe there is no chronic liver disease, and they don't believe PSC is a possibility any longer. Unfortunately, it still doesn't explain why this happened to begin with which they would like to know so that future problems or recurrences will not surface.

The bad news...

They want John to meet with a Pancreatic/Liver surgeon specialists for a Whipple Procedure. The Whipple procedure, also called a pancreaticoduodenectomy, is basically the removal of the gallbladder, common bile duct, a portion of the duodenum and the head of the pancreas.

Because it is an extensive procedure, the goal is to only operate on patients who may have removable tumors (yes, I know they are saying no cancer). This is facilitated by studying the patients prior to surgery with a number of different types of x-rays and/or endoscopic procedures (which John has certainly had).

It is sometimes difficult to obtain a definitive diagnosis of cancer either before or during the surgery because the pancreas tends to interfere with interpreting a needle biopsy. It is common to biopsy a cancer in this region and only obtain a benign report. That’s where the surgeon judges whether or not the patient has cancer.

At times, a Whipple procedure will be performed without a definitive diagnosis of cancer (now you see why they are looking at this for John). In those circumstances, cancer will often be found in a final pathology specimen. The Whipple procedure is sometimes performed for benign disease to control pain or to remove a pre-malignant tumor that may progress to invasive cancer with time – all of which reinforces the importance of having a surgeon with a great deal of experience with operations for cancer of the pancreas and periampullary region.

Before this; however, the surgeon may want another Spyglass ERCP Biopsy first. This is the one John had in Denver. So, we will be setting a time to meet and talk to the liver surgeon specialist, possibly set a time for yet another ERCP procedure in Denver, and schedule a follow-up with his primary internist. These should all happen within the next 4-6 weeks but we don't know if the surgery will occur in that timeframe.

This is getting OLD but we press on...

MaryDee

Subject: Update for John...

Date: Sat, 14 Nov 2009 12:34:44 EST

Well, things went from not so great to pretty bad in a very short timeframe.

On Thursday we went up to Denver to talk to the surgeon. He stated that even though all the tests have come back negative, there is still an 80% chance of cancer. He felt the only alternative left is the Whipple surgery: removing part of the liver, part of the pancreas, part of the intestines, and the gall bladder. They then send to pathology and if no cancer, they reattach everything and all is well. If there is cancer, they take more until no cancer shows.

To prepare, the doctor did a full physical and CT Scan.

We got a call Friday evening stating that the CT Scan showed the mass in the pancreas (which was seen with the last procedure in Denver a few weeks back); however, it appears it may have grown into the blood vessel. The doctor still wants to do the surgery...here's the but:

If the mass is just around the blood vessel he can still do the Whipple. If; however, it has grown into the vessel, he will not be able to do the Whipple or remove the mass. He would do a biliary bypass and test the mass. If the mass is growing into the vessel, the chance of the mass being malignant are extremely high.

Needless to say, we are not in very good spirits right now. The surgery is scheduled for December 9. Please, please have us in prayer. thanks for being there!

MaryDee

Subject: Latest with John W

Date: Fri, 4 Dec 2009 22:42:08 EST

John had some blood work done on Monday and the Doctor was concerned he might now have diabetes - a side effect of the pancreas tumor. The glucose was high but the hemoglobin was low and averaging everything together indicates elevation but not diabetes at this point.

We will have to watch his glucose/insulin levels; however, it is slightly good news at this point. Also, when we mentioned to the doctor here that the surgeon in Denver thought there was a 20% chance that it is NOT pancreatic cancer, this doctor said "really? that high?" suggesting that it is usually a much lower percentage...so, we're kind of thinking a bit more optimistically.

The Denver surgeon also stated to John's doctor here that he feels fairly certain that he will be able to get it all - so we will think positively on that end as well.

We are set to go up to Denver Tuesday as we have to be at the hospital by 6:30 a.m. on Wednesday and I will be up there for most of the time while he is in the hospital. I will have the laptop and try to keep you informed.

P.S. if you are new on this list and want previous email information, let me know and I will fill you in.

Thanks as always for all your thoughts and prayers.

MaryDee Weigel

Subject: Status of John's Surgery

Date: Wed, 9 Dec 2009 19:49:41 EST

I will cut to the chase...we do not have good news.

The tumor was larger than expected and inoperable. The doctor took what he could and the pathology report did come back as malignant. He did a bile duct bypass, removed the stents, and did a duodenem bypass. The tumor was also blocking the duodenem. It has infiltrated pretty much all the major areas. The next step will be to meet with the cancer specialists and discuss chemo and radiation.

John was still in recovery when I left for dinner and they moved him into his room just a few minutes ago. He wasn't very comfortable, but that is to be expected. He has an epidural and a morphine pump so his pain level should be controlable to the 1-3 out of ten level.

He is at the University of Colorado Anschutz Hospital in Aurora, Colorado on Colfax; Room 922. We expect him to remain in the hospital for the next 5-7 days, but I may suggest staying here a bit longer because I don't want him on the road to the Springs with a seat belt any time too soon.

I'll let you know how he is doing tomorrow.

Thanks for your prayers - - keep them up - - we have a long road ahead.

MaryDee Weigel

Subject: Re: Very sad news about John

Date: Fri, 11 Dec 2009 09:55:50 EST

Hi Ange:

Thank you for all the information. I was glad to hear you were home and I hope and pray your results are good. Sounds like Colorado Hospitals are a bit better than New York Hospitals; i.e., they told us to bring sweat pants and he doesn't have to ask for TV, he just gets it. He was up watching O'Reilly last night - should have known I couldn't get away from that guy even here.

We are up in Denver and I am staying at The Residence Inn by Marriott - about 5 miles from the hospital. The primary surgeon yesterday stated that we would need to come in for a clinical next Thursday so I am glad I reserved the room through to Saturday next week. I have no intention of taking him back to the Springs, then back to Denver, then back to the Springs in just a matter of days.

I have not seen the full length of the incision at this time due to packing and gauze and such but it does not appear to be as long as they initially indicated. I presume it is because they ended up not doing the full whipple procedure. Originally, the doctor was going to cut a horizontal completely under the ribcage from left to right but, it is only on one side (as far as I can tell). The doctor had said that if the tumor was removable he would remove it and then proceed with the whipple. This would have been a difference of 3-5 hours in surgery vs. 8-10 hours as well as 4-7 days in hospital vs. 10-14. I had told Tim that he needed to be ready because if I saw the doctor within 3-5 hours I would fall apart; he came out at 5 hours exactly - and I did.

They did get John to his permanent room the same day as recovery. He was in recovery from 12:30 to just before 6:00. I was allowed to visit for 10 minutes at a time every two hours. At 2:00 the doctor came to tell John that he was not able to remove the tumor due to the amount of infiltrating. I asked later about the stage and he stated it is considered locally advanced, stage IV. John later said it is hell to feel this crappy considering the outcome.

Yesterday was his first full day in the hospital room and they had him sitting up for 15 minutes by early afternoon. He went from 2.3 pain level to 10 in a matter of seconds (which I am sure you can emphasize with). Shortly after they had him sitting up, Ian and Tania came by - good timing because they were able to keep his mind off things and the 15 minutes went by fairly quickly.

Later that afternoon, I went back to the hotel for the "free" dinner they offer and unfortunately missed the first walk. I was sad to have missed it. They also brought him his first meal which he had eaten by the time I got there. Broth, jello, juice, tea and such. They then brought him another tray (they did this to him before when he was overnighting after the ERCP-Spyglass procedure). We took the jello off that and she took the tray back.

He is on an epidural now and I am assuming they will take him off today - I am hoping for tomorrow but they move fast as you know. Thanks for the input on the med options - they haven't talked to us about that yet. He also had the NG tube and didn't realize it was there until they came to remove it. He is not looking forward to having the foley catheter removed - has had them before and says it hurts quite a bit when removed.

Thanks for the info on bumps in the road. It is a fairly easy route from the hospital to the hotel (and I can avoid the Denver Interstates) but we do go over railroad tracks. I am hoping they release either well before or well after rush hour. Having gone back to the hotel under both circumstances it is not so much stop and go as it is extremely slow and I will want to get John comfortably in bed sooner rather than later.

I had brought applesause, mandarine oranges, soup, and such from home to eat while John was in the hospital. I am glad your email came because I plan now to save that stuff for John when he is in the hotel. Of course, we were planning on it just being me for the 10-14 days. Fortunately, there is a K-Mart close by so I will be able to run over if need be to get additional items when necessary.

I know he will be much happier once we get home, as will I. I appreciate the information about staying on the one floor. I will have to ask John because he may prefer his own bed to the daybed couch but no stairs makes a lot of sense to me. If he decides to try the daybed first, I will ask Tim to go to the house and get it set up so John can get right to it when we get back.

Well, it is time for me to go down for the "free" breakfast and head over to the hospital. I am typing this on the laptop but don't take it with to the hospital. The blackberry is, of course, set up to receive and send.

Thanks again for all the information and let us know when you know your test results. This sure is a suckie year for Weigel men!

Love, MaryDee

Subject: John's status

Date: Sat, 12 Dec 2009 23:26:44 EST

This has certainly been a long few days. John has been having his ups and downs since the surgery. I am referring here more to the physical rather than the mental, though that has been happening too. The doctor did let us know this is a locally advanced stage IV pancreatic cancer. We probably won't talk to an oncologist until we get back to Colorado Springs which won't be until the 19th. We have a clinical follow-up scheduled with Dr. Stiegman on the 17th and even if they release John sooner I won't take him to Colorado Springs, back to Denver, and then back to the Springs in just a matter of days. So here we stay.

It is the end of day 4 (Saturday) and John still has the epidural in place. The day they plan to remove keeps changing so we take one day at a time. He had been on a clear liquid diet which transitioned to a full liquid diet which transitioned to a full diet for dinner tonight. It seems each time the diet transitions he seems to have a hard time right after. I figure his body is adjusting little by little but he suffers the consequences.

We haven't done too much "heavy" conversation though we have done some. We know that will come and we still don't have enough information to make any kind of decisions. The miracle I am praying for is to be able to celebrate our 30th wedding anniversary together which will be 6/29/2013. Feel free to bend God's ear in our direction.

MaryDee

Subject: Re: Sunday morning

Date: Sun, 13 Dec 2009 09:52:43 EST

It is encouraging to read your progress, not just for John's sake but your's as well. I most certainly appreciate the foresight.

The hospital does have free WiFi; however, their firewalls are megaton and there is not a whole lot one can access. Not too big a deal to John; however, as he is more of a reader then a computer guy when he has "free" time. He hasn't felt too much like reading, though he has his book with him. We share some favorite authors and I usually read out loud when we go on long trips. I have our latest with me and have been reading that - he usually falls asleep - assume it is not a personal thing :-).

He also has a shower in his room but is not able to utilize it yet due to the epidural and the foley. I did give him a sponge bath yesterday and he said it helped him feel better. They have these interesting "shower caps" that you heat in the microwave for 30 seconds, put it on and massage the hair and scalp, leave on for 2-3 minutes, then remove. Washes the hair without the need for rinsing - pretty interesting. The warm massage was nice and the clean hair was a pleasant by-product.

We will be back for Christmas. Originally we were going to decorate and I still plan on doing some (especially since I have seen some of the decorations at the hotel and have some new ideas now) but we weren't going to bring up the tree. It is very heavy and could get it up together, but one person taking it down is too much - - not to mention there is a table with a computer (antique) in the living room where we would normally put it. John did not want to take down the antique. It goes well with my 100+ year old piano.

I had also planned on doing the decoration when I went back to the Springs to overnight for an a.m. appointment. Unfortunately, that plan will likely be changing because I believe John will be out of the hospital and in the hotel room and I will not leave him alone overnight. I will decorate when we do get home.

We are still discussing where he will stay in the house. I know you said the main level and we do have a day bed which Tim is setting up for us. John thinks he may prefer to be in his own bed which is closer to the full bathroom (only a 1/2 bath on main floor - no tub or shower). I also suggested we could both move to the basement where we have a handicap shower (somewhat amazing foresight).

Man, this sucks.

Subject: Re: Sunday evening

Date: Sun, 13 Dec 2009 22:12:21 EST

Today was a good day! They took out all the IV's, took out the epidural, took out the foley (and it didn't hurt this time -- he thinks the nurse is wonderful). The only thing left is the oxygen. We have tried for two days without success to get him off the oxygen. Each time he ran around 86-88 and they want him at 90 before they will take him off.

They tell him, of course, to use his inspiron. He is up to 1250 most of the time, occasionally hitting 1500 and tonight he hit 1750 twice. Still hates to cough. He is on percaced and says the pain is usually 1-2 but hits 5-6 with the coughing.

They do try to get him to drink more and he did a bit better today. It helps that he is taking oral meds now so he has to drink for that anyway. Since the foley came out he has been doing quite well with the urine bottle and had gotten up twice to use the rest room. Mobility wise he's not at his best. Today he sat up for 45 minutes and later we took a walk down to the nurse's station then around to the end of the hall and back. He insisted on trying to get himself into bed and pulling himself up so it took a while, but he did it.

He has a room of his own and the bathroom is sort of a giant shower with a sink and toilet at one end. Lots of rails around and a chair to sit on while he showers. The bed has a mattress that inflates and deflates in various areas and to various levels to help prevent bedsores but they try to get him to move around anyway. He also has the calf huggers to help prevent blood clots -- but of course they want him to walk too to do that.

We always met after work during winter time at the Citadel to walk the mall and have our weekly dinner date. We'll probably use that mall or the Chapel Hills mall to do our walking. Glad you didn't hurt yourself in your walk -- caught my breath when I was reading that in your email.

He had oatmeal and fresh fruit for breakfast -- grilled cheese and cooked carrots and ice cream for lunch -- herb chicken, mashed potatoes, broccoli, and Jell-O for dinner. Yuck on your hospital meal but yeah, guess if I had to eat it to get out I would.

They are talking about releasing him tomorrow and he thinks he wants to go home. I am still worried about a drive to Springs, back to Denver, back to Springs (1.5 hrs each time assuming no accidents or heavy traffic) in a four day time span but I understand the desire to be home. Think we'll play it by ear. I keep remembering his return from OK City and realize that travel was much more intense but it did delay his overall recovery by about two-three weeks. I suggested driving back to the hotel to see how sitting in the car feels, plus if it is late in the afternoon I will want to avoid rush hour and night driving. Only time will tell.

Keep getting healthy Ange and hang to the grass - for walking not smoking :~)

mdw

Subject: John Status 12-14

Date: Mon, 14 Dec 2009 22:28:51 EST

We are home. They came in today and took the last of his tubes, needles, and anything else that he didn't walk in with out. John had been eating well and "tolerating" sitting up and walking so they released him around 3:00 this afternoon.

Our original plan was to stay at the hotel overnight and head home (the Dr. here said he didn't need to see him on Thursday as long as he arranged to meet with his Dr. in the Springs). When John called to make an appointment, the only time they had available before February (yes, February) was tomorrow at 8:00 a.m. so we packed up and hit the rush hour traffic. We are home and John is resting comfortably with tomato soup in hand.

I started to listen to the many messages left on our home phone and one was from his doctor's office here saying the appointment is not tomorrow but rather Wednesday at 8:00 a.m. That's Murphy's Law for you. We are both very glad to be home though and I think John will rest much easier in his own familiar surroundings.

Thanks to everyone for their encouragement, prayers, and support. It makes everything much easier knowing we have such a great network of friends around. I'll keep you posted.

MaryDee

Subject: Saturday morning

Date: Sat, 19 Dec 2009 13:57:23 EST

John is doing fairly well, still a bit slow, but to be expected. Yesterday we went to the car dealer to get our free oil change (assume you know we had to get a new car - Ford Escape). It took longer than anticipated and it took a lot out of John so last night wasn't so great.

John has also lost some weight. His gastro doctor told him to start drinking Ensure to put some weight on and get healthy for the chemo. Don't know if the bowels are back to normal - since the pancreas was starting to mess that up beforehand. He may have to continue the Creon. For now he isn't taking it but the doctor said to start again if he has problems. It is hard to tell, of course, because the Percocet has a tendency to constipate. He takes it about every 6-8 hours right now.

He is eating better - was doing mini-meals for a while but is starting to eat more now. Friends have been bringing a meal a day by and we now have enough to have leftovers for several days as neither of us are eating a whole lot.

John is still having some trouble bending down to pick up stuff. Hasn't said much about coughing lately and hasn't apparently needed to sneeze.

Subject: 12/23 update on John W

Date: Wed, 23 Dec 2009 15:39:12 EST

We saw the oncologist today. Of the various pancreatic cancers, adenocarcinoma is the most dangerous (the doctor's words). It is difficult to detect and metastatic. Essentially with adenocarcinoma of the pancreas there would be three options.

The first is surgery where they remove the tumor or chemo/radiation to "shrink" the tumor to where it can be surgically removed - this option is not open to us because the tumor is too involved with the blood vessels and other organs.

The second is radiation alone or chemotherapy alone which, the doctor stated, is not very successful.

The third option is a combination of radiation and chemotherapy which is his recommendation.

Dr. Marcus is the chemotherapy specialist and he set up a consult for us with the radiation oncologist; both work in the Rocky Mountain Cancer Center. We will also consult with a general surgeon to have a port permanently placed under the clavicle where the chemotherapy can be pumped in and any other vein intrusive work can be done when needed.

We will go in for a PET Scan to determine if the cancer has spread to other areas such as the liver and lungs. If the scan shows a spread of the cancer they will try the chemo first and then attack with the radiation/chemo combination. It is possible for there to be spread and the PET not show - 0.5 cm in size can be detected by the scan.

If there doesn't appear to be any spread they would likely do the radiation/chemo combination and then chemo alone. It would be about 5 solid weeks of radiation/chemo followed by chemo only of the drug gemcitabine which is a 30 minute drip, 5 days a week, for three weeks, one week off; repeat for several months.

If we do nothing at all, we are likely looking at a few months - maybe a year. If the tumor were operable there is a 10% likelihood of surviving 5 years with aggressive treatment. John falls somewhere in-between. There are also clinical trials to consider; however, there are none available in the Colorado Springs or Denver areas. MD Anderson and Mayo do have clinical studies; but that would likely require living near the clinics essentially.

Nutritionally, John has no restrictions and should actually be looking at high protein/high fat foods to help keep or add weight during this process. How ironic - all the stuff we're not supposed to eat is now good for him!

I am still saying that my miracle prayer is for us to be able to celebrate our 30th wedding anniversary together - more if possible and I shall act accordingly. For all your prayers and assistance as we are going through this process, we deeply and gratefully acknowledge and thank you. Keep on praying!

MaryDee

Subject: Re: Thursday night

Date: Fri, 25 Dec 2009 00:32:28 EST

Yes, they did endoscopy, two ERCPs (one with a new "spyglass" technology), an MRI - multiple biopsies and all came out negative. This isn't unusual apparently for pancreatic cancer. Several different doctors have stated that pancreatic cancer hides very well. The oncologist even said there could be spread and it won't necessarily show on the PET - - great huh.

John is doing the Inspiron primarily because he isn't doing much walking - I suspect there is some depression involved with his inactivity - I bug him, but try not to too much because I don't want to become a nag.

We had our Christmas with the grandkids today. He was very happy to have all the kids but exhausted when they finally left. John did acknowledge that he has lost about 15 pounds total - he was a bit in denial on this and kept saying 6-8 but it was obvious he had lost more.

We get the staples out on Monday so hopefully, he will start to feel a bit better - and walking straighter - he continues to be somewhat overprotective even though he says nothing hurts.

long, tough road ahead, I fear.

mdw

Subject: Re: question for John

Date: Thu, 31 Dec 2009 23:02:03 EST

he has no limitations...supposed to eat protein, fats, carbs (to increase weight). We're getting lots of meals from friends and family which have pretty much been fairly decent meals; chicken, meatloaf, stroganoff, stuff like that. We've gone out a couple of times but not for fried foods. The depression is getting pretty rough and I don't have a clue how to help him get through it. You would think I would since he had to go through it with me some years back. It doesn't help that a good friend of ours is dying from cancer. We called about going by to see her today and were told that she has maybe two weeks left - life sure sucks right now.

Subject: Upcoming dates for John W

Date: Sat, 2 Jan 2010 01:23:12 EST

Next week will be quite a busy week for us. We are scheduled to see the surgeon and make a date to have the port put in for the chemo. We have the PET scan scheduled for Monday. We will also be meeting with the Radiologist one day and with the Chemotherapist one day. They probably won't be starting the Chemo/Radiation for a few more weeks yet because they want John completely healed from the original surgery.

John is slow in coming back from the surgery; still fatigues easily; not much appetite. He does try to get a 30 minute walk in every day though so that helps. It's kind of weird how time is working right now; the weeks go flying by and yet it feels like we're moving in molasses. We will keep you up to date as we learn more. Keep those prayers coming; wisdom, healing, many more years together and thanks for all the prayers you've prayed already!

MaryDee

Subject: Update on John W 1-7-10

Date: Fri, 8 Jan 2010 10:04:11 EST

We had our whirlwind visits to the various cancer doctors this week. The PET did show a "spot" however the doctors all felt it was a result of the previous liver biopsy and not a cancer hotspot. We now have our treatment lined up.

John goes in today for the port placement. This is out-patient but it is an all day event at Memorial Hospital; guess I'll get a lot of reading in...

We start Radiation and Chemotherapy next Monday. The radiation is 15-30 minutes a day, 5 days a week, for about 6 weeks (weekends excluded). The Chemotherapy will be attached to the port and will be infused 24 hours a day throughout the radiation treatment time - that is, about 6 weeks. The first day of treatments will be longer due to it being the start and there will be teaching involved.

When the radiation stops we then move on to a different chemotherapy which will be once a week for three weeks, then one week off, then three weeks, then one week off. Neither of us remember for how many weeks/months that one will go but I'll let you know. It is a 30 minute drip and we will go to the cancer center for that one.

John asked about prognosis, which of course in the end will be up to God; however, "statistically," if the treatments work, 1-3 years. If he goes 3 years without a spread or recurrence they consider it a "cure" but did caveat that with no guarantees that it won't spread or reactivate later.

The doctors did indicate that side effects are fairly minimal; which we are hoping for as well. Though it is too early to tell today, we are currently still planning on our Superbowl Party, for those of you who usually come (and any who might want to come). We will adjust accordingly as time progresses.

That's it for now.

MaryDee W

Subject: Status Update for John W 1-18-10

Date: Mon, 18 Jan 2010 23:26:02 EST

Well, we are a week into the Radiation and Chemo Treatments. We definitely have our up days and our down days.

The Chemo is a 24/7 infusion and John carries it around in a black fanny pack. He says it's heavy - but my purse is heavier! It is battery operated and they appear to need changing about every 3-4 days. This wouldn't be a big deal, except the battery alarm usually goes off late at night or early in the morning (of course). They changed out the needle and the bag today and lowered the dosage from 2.1 ml to 1.6 ml every hour.

The radiation is fairly quick - he is in and out in about 30 minutes. He did get sick last Wednesday and started taking the anti-nausea medication before he goes in for the radiation. This seems to have done the trick. The nurse did say he should be taking care of himself as if he were preparing for a marathon.

He isn't having a lot of effects now; however, the effects are cumulative. He needs to be taking care of his skin and the inside of his mouth now to help keep the dryness and mouth sores that may occur from being very bad when the effects do start to show. He also needs to be getting lots of liquid into him as the treatments progress.

Mostly, he is tiring easily. This is a result of the surgeries as well as the treatments. Little by little he feels better each day recuperating from the surgeries but then the treatments take their toll. The surgeries did rob him of having much of an appetite which the treatments now exacerbate. He eats because he knows he has to but never really feels much like eating, unfortunately. We are hoping that will improve.

Thanks for being there for us.

MaryDee

Subject: John W Update 1-29-10

Date: Fri, 29 Jan 2010 21:54:40 EST

Wow, we are three weeks into the radiation and have only two and a half to go. We aren't sure if John will get a break before they start the second type of chemo or if they'll go right into it. This chemo (5FU) is 24/7 and he has a pump (his buddy) that he carries everywhere, sleeps with, and bathes with. I don't think he'll miss it when it's gone.

Doctors say they don't radiate the same area so, unless it metastasizes someplace else he won't do radiation a second time. They also said that pancreatic cancer is one of the few cancers that is somewhat predictable and if it metastasizes it almost always goes to lungs, liver, or bone but not normally anyplace else. A lot of cancers, we are told, are not as predictable and can move randomly anywhere making it harder to work with. We, of course, see this as a positive thing; strange how the concept of positive thinking changes.

The second chemo, gemcitabine, is once a week at the cancer center for a 30 minute drip three weeks in a row and then 1 week off. We still don't know how long that regimen will be and are assuming they will make that determination when they complete the next PET.

The treatments are having their effects on John, as expected. The hardest it seems is the lack of appetite. It is very hard to eat when you don't feel hungry. Even though we know it is important, it feels forced and somewhat robotic. He eats because he know he has to; it is really too bad that I can't siphon off some of my weight to him - then we'd both benefit. Fatigue is another culprit that sneaks up when least expected. He may be doing fine and feeling like he has energy and within minutes feel overwhelmed with exhaustion. The nausea seems to be kept at bay with the anti-nausea medication. Still feels queasy from time to time but hasn't gotten physically sick to his stomach except for that one time.

We're still praying for the 30 year anniversary plus; good thing God knows I'm a demanding sort. Thanks for being there with us.

MaryDee

Subject: Re: John W Update 1-29-10

Date: Sun, 31 Jan 2010 18:29:40

One thing John has been grateful for is no migraines or headaches. This has not been a good weekend. Lots of bowel issues and depression. M

Subject: Update on John W 2-9-10

Date: Tue, 9 Feb 2010 09:08:28 EST

Last week when we went to the oncologist (2/1/10) John had started to get mouth sores. One extremely bad one was just inside his lower lip. When the oncologist looked at it he decided to take John off the chemo for one week. We did continue the radiation treatments.

Yesterday (2/8/10) when we went in, the sores were healing quite well so the "buddy" is back. I think it takes more time to get use to having the buddy and a lot less time to get use to not having it. I'm not sure how much is psychological and how much is actual but his body definitely seemed to react to the chemo being back. At least we only have a week and a half left of the radiation and since the 5FU's main purpose is to assist the radiation we are assuming that will stop too.

We still don't know when Dr. Markus plans to initiate the gemcitabine once the radiation is finished. Another assumption here is that he will determine that when he sees where John is at physically. That will only be once a week for a 30 minute interval; however, word on the street is that is the tougher chemo. He has not gained a lot of weight but is apparently holding steady which is a good sign.

The loss of appetite continues to be a challenge. John does not feel hungry and food is not very appetizing to him right now. He started having Boost Floats (ice cream with Boost poured over it) and doughnuts appear to be an attraction, otherwise he eats because he knows he has to; it will be nice when food is more of a can do as opposed to a have to do.

A very big THANK YOU goes out to Monty for shoveling our snowy and slippery driveway and sidewalks. You're the best!!

That's it for now.

MaryDee

Subject: Latest for John W 1-19-10

Date: Fri, 19 Feb 2010 10:17:12 EST

John had the last of 28 radiation treatments on Wednesday and the last of the 5FU Chemotherapy on Thursday. They do not do radiation on the same area so, unless cancer shows up somewhere else, there will likely not be any more of that!

He gets a little more than two weeks reprieve and starts the Gemcitabine Chemotherapy on Monday, March 8. We will go in every Monday for three weeks for a 30 minute drip. One of the major side effects is flu-like symptoms the first few days following including fever.

A general side effect of radiation and chemo is a change in your taste buds. Essentially, this means that food that you usually enjoy no longer tastes the same. Either it really doesn't taste good at all or it has a rather bland taste effect. Needless to say, this makes the eating situation even more difficult - if you don't enjoy the flavor, why eat it. We are still searching for foods that taste good enough to eat (as it were).

We still don't know if any of this is working or not and won't until the next PET scan which will occur around mid to late April. We keep fighting the good fight however and pray for shrinkage or total elimination when that time comes.

Until next time...

MaryDee

Subject: Re: Respite

Date: Sat, 27 Feb 2010 21:34:57

I think we had hoped for better days; however, it appears not to be so. He is still quite tired and often nauseated. Needless to say, he is not very happy with this and frustrated. We did get to have one of the grandchildren for a little while today. We use to take one a week every Saturday but this hasn't been the case for months now. It does wear him out though, which is sad.

Nothing quite like your winter storms but we have had out share as well. John normally shovels and has not been able to; however, our daughter-in-law's father has come by and shoveled for us, which has been a blessing. Friday, he hadn't come by so I went out to do it. I started crying because I was just aware that at some point in the future, I will have to do this all the time - man, I hate those moments!

We have been watching the Olympics (especially our girl from Colorado Springs!) and, oddly enough, I have found myself very interested in curling - who would have thought...

Subject: 3-10-10 John Status

Date: Wed, 10 Mar 2010 09:47:05

We met with the doctor on Monday and reviewed the upcoming regiment. He stated that the three weeks of Monday Chemo and one week off is considered one round. He wants to do at least four rounds and, if he appears to be handling it well and progressing, will want to do two more for a total of six rounds.

John has a 20 minute drip of anti-nausea medication first and then the 30 minute drip of the chemo. Monday, John seemed to be doing pretty well until later in the evening when he got quite nauseated (no vomiting though, thankfully). He has felt extremely tired/fatiqued these few days. We are hoping that as the week wears on, he will feel less fatigued and feel up to getting out.

Keep praying - we are still planning on celebrating our 30th together is 2013 and many more!

MaryDee

Subject: 3-22 Update on John

Date: Mon, 22 Mar 2010 21:24:29

Today we went in for the third Monday of the first round. They always do a blood check first to make sure the red and white cells and the platelets are all in good shape.

Unfortunately, both the red and white cells were at a critical low and the platelets were low. This basically means he is much more susceptible to infections and illness and his chemo would drop it even further. Because of this they did not give him his chemo today. It is bittersweet; in once sense it was nice not to get juiced but then we feel like we are missing a chance to get to the cancer. Today is John's 64th birthday so we are looking at is as a nice birthday gift.

Next Monday would have been his week off; however, we are now going in and, if the blood count looks better, they will do the chemo then. We are scheduled to meet with the oncologist on April 5th and will review the round sequence. It may be that we will have to change from a 3 week on 1 week off to a 2 week on 2 week off regiment. One definitely has to be flexible in this process. John has been taking medical marijuana (in pill form purchased at the pharmacy) which seems to be helping with his appetite. He does seem to be eating more and eating well; however, he has lost a few more pounds. To say the least it is frustrating to John - he keeps eating but not gaining (I on the other hand do not appear to have that problem). His body has been through a lot over the past 7 months so it's not too unusual to see it struggling to get well and it is hard to heal when you are being bombarded with chemicals. Putting the time on paper - 7 months - sure feels like it has been longer than that.

Subject: 3-29-10 John Status Update

Date: Mon, 29 Mar 2010 22:33:03

One thing about cancer; you can't lock yourself into a routine - flexibility is definitely the name of the game.

The good news is that John's white cell and platelet counts were back up to a healthy level so he was able to have the chemo today. Normally, this would have just started the three week on, one week off cycle again; however, the doctor decided to change the pattern. We are now on a one week on, one week off cycle. Four weeks is still considered a round but he will only have had two weeks of chemo instead of three.

John isn't too happy with this; he understands the need to have healthy white cells and platelets that can fight the cancer but doesn't feel we are being as aggressive as we could be. My suspicion is that we will probably do more rounds. We are scheduled to meet with one of the doctors on the 12th but not John's primary. We will be meeting with Dr. Markus (the primary) on the 26th. Somewhere in these meetings we hope to find out how many rounds we can now expect to do.

As I stated in the beginning we can't really "plan" on routine so, stay tuned...

MaryDee

Subject: News about MaryDee

Date: Thu, 08 Apr 2010 09:39:23

When it rains, it pours... My dad went into the emergency room late last week with major stomach pain - they indicated there was a blockage in the small intestine. Finally decided they needed to go in for surgery on Tuesday late afternoon. Originally stated the surgery went well; however, they were unable to stabilize his blood pressure and he went to be with the Lord on Wednesday morning. He's been wanting to go home for a long time - after all he was 98 years old. Overall, this was very short on the pain side and up to this point he essentially was healthy, able to walk, and had all his faculties.

I realize this isn't the best way to let people know but it is quick. We will have a service some time next week at Sacred Heart Church on Colorado Avenue. He will be buried at Ft. Logan with mom - and close to his best friend, Frank. Obituary information will be in the Gazette under Theodore Crowley.

My apologies if you get this email more than once - I am a bit foggy right now.

MaryDee

Subject: This is a REPEAT email on John Weigel's Status...

Date: Sat, 12 Jun 2010 01:29:33

apparently several names fell off the distribution so I have updated and am resending - my apologies for those who are receiving it twice and those whom I missed...

----------------------------------------------------------------

I am going to try to be concise on this update essentially with bullet points as there is a lot of information:

- Tumor markers, came back in the normal range - This means that there is no indication of any cancer levels throughout the body; not that there is no cancer, only that it is not detectible - PET shows improvement on the tumor and no additional cancer - The spot they originally saw on the liver and couldn't be certain if it was cancer or surgical scar was indeed/apparenty surgical scar and not cancer

- Picture the tumor as one large mass; now picture the center of that tumor completely dead - there are still cancer hot spots around the edge of the tumor; however, the metabolic activity went from 7.3 to 5.3 - in other words the tumor is still dying off - We will continue the two week on/one week off series of Gemzar Chemotherapy through to September - We will do another PET sometime in October

- John still gets very nauseated every time he eats - needless to say this makes him not want to eat - he has not been maintaining his weight and has lost almost 10 pounds over the last 3 weeks - Doctor thinks there might be a stricture in the abdomen area rather than reaction to the chemo and has requested that his GI doctor do a complete GI series - that is scheduled for Wednesday a.m. - John often has sever lower back pain after he eats - Doctor thinks this may be due to the pancreas now having dead material to deal with - The pancreas squeezes to send out the needed enzymes to digest and squeezing around a dead tumor may be causing the pain

I asked about prognosis and, of course, the doctor didn't want to commit to anything too specific. He did say; however, that the survival (3+years) PROBABLY went from about 5% to about 30% based on these results. My experience with cancer is to never, ever relax or think you are beating this because I think it takes that moment to infiltrate. So, we keep fighting and keep praying. I still want the 3 years to our 30th anniversary and am praying for a miracle of more years. Please keep praying for us. I know God listens.

MaryDee

Subject: John Status and another Procedure

Date: Fri, 18 Jun 2010 23:06:52

John had the GI Series and the results showed some irregular narrowing. He goes in on Thursday, the 24th for an EGD/Push Enteroscopy.

We are praying that it will show something that is non-threatening and easy to fix and hopefully be the cause of the pain he gets when he eats.

Because of the pain he eats in very small quantities which, of course, does not provide the kind of calories he needs to be taking in; thus, he is down to 142 pounds.

As soon as we know about Thursday's results, we will let you know.

MaryDee

Subject: John Status, Friday 6/24/2010

Date: Thu, 24 Jun 2010 22:56:16

John went in for the EGD today. Bottom line is this: where the stomach and small intestine meet there is a blockage. The doctor stated it looked "angry" and it is a blockage with some ulceration. She took as much to biopsy as possible without causing damage or perforation.

It can be inflamation and scar tissue from the radiation or it could be a progression of the cancer. We won't know until the biopsies are back which could be as early as late Monday afternoon.

It is most likely the cause of the pain when John eats because it is right up next to the opening to the small intestine and the doctor wasn't even able to get the scope past it to view the small intestine area. For right now he is on a liquid diet - I am sure he will be sick and tired of ensure. I make him ensure "shakes" which add ice cream so he can get 400-450 calories with each shake; but, one can only take so much chocolate, strawberry, vanilla shakes. He, of course, can have cream soups, pudding, applesauce, etc. It is the Ensure and Boost that provide the highest calories though.

Will keep you up to date as we know more.

MaryDee

Subject: Status on John as of 6/26/10

Date: Sat, 26 Jun 2010 23:07:05

John's oncologist called on Friday and stated the biopsy from Thursday's EGD showed the blockage to be a bacterialogic infection. While this is good news because it isn't progression of the cancer it is a bit scary because of John's compromised immune system.

They put him into the hospital on Friday afternoon (Penrose Main, room 1100). They needed to take more blood to try to determine the bacteria. The doctor indicated the bloodwork was good; which I think was doctor-speak for nothing showed up in the tests. He went in for a CT scan of the blockage area. Both the GI specialist and John's oncologist think that it may be an abcess due to the deteriorating and necrotic material from the radiation and chemo. If we understand the doctors correctly they are hoping the antibiotics will take care of the problem; however, they may need to do surgery.

I was putting off sending this update in the hopes that we would have the CT scan results but we didn't have the information as of 7:30 tonight so I decided to fill you in with what we currently know. John will probably be in the hospital through Monday and possibly longer.

I'll let you know when I know and thanks for riding this roller-coaster with me.

MaryDee

Subject: John Status as of 6/30

Date: Wed, 30 Jun 2010 11:25:51

As of today, John is still in the hospital. He is doing much better in terms of eating since they put him on a liquid only diet. Unfortunately, there is a limit to what constitutes liquid and one becomes quickly bored with available options. They are also intravenously feeding him with about 2000 calories every 24 hours.

Yesterday they did another EGD. This doctor indicated the one blockage area was (he believes) where they tied off the stomach/intestine area when they did the partial Whipple Procedure back in December. They then created a new opening by attaching an area of the small intestine to the stomach and he was able to go about 40 cm into the small intestine without encountering any blockage. While this is good news to some extent, we are now back to square one with the question - why the pain when he eats.

Yesterday the doctor indicated he was going to suggest a more involved GI and/or CT Scan with contrast. Today he was suggesting to kill the nerves in that area of the stomach so there would no longer be pain. While this is a quick fix, we aren't sure if blocking the nerve endings is really the right way to go. Obviously, we have a lot of discussion and decisions to deal with yet.

MaryDee

Subject: John Status 7/21/2010

Date: Wed, 21 Jul 2010 22:28:51

Not a lot to report but some have been asking so I figured I would send out a quick update.

He is doing well and still maintaining good control over the pain. John did decide to basically stick to a mostly liquid diet and has been mainly drinking Ensure and shakes and such. I think it is mostly because he is still feeling a bit gun shy about eating more solid food with a concern that the pain will return. Additionally though is the fact that the chemo has really messed with his taste buds and food isn't tasting very good. We did go out tonight; however, and he ordered a regular meal and ate the vast majority.

He had gained almost 10 pounds when he was in the hospital, going from 138 to 147; weight last week and this week was about 143 so, even though he lost a few, he does seem to be maintaining.

Believe it or not we only have four chemo sessions left; 7/26, 8/2, 8/16, and 8/23. We're not sure when exactly they will schedule the next PET to see where things stand with the active cancer but are guessing it will be sometime in September. It is our understanding that, even if there are still active cancer cells, they won't do any additional chemo so we really need prayer that these last chemo battle bombs will do the job to completion. Until next time, MaryDee

Subject: Update on John W 8/9/2010

Date: Mon, 09 Aug 2010 21:59:06

Much as I hate the use of the word surreal I feel that is the best descriptor as we get down to the end of the journey as we know it.

The chemo John had on July 26 hit like a ton of bricks. He ran a very high temperature for several hours and for the first time I actually called the emergency number given to us when we started. Fortunately, the temperature dropped and he stopped throwing up and was able to rest.

The chemo on August 2 was just like all the others, no temperature, no throwing up, just very, very tired. Go figure!

This is his off week so no chemo and maybe some good recovery time. His weight is still down around 142 but he doesn't appear to be losing any more. Food still doesn't taste very good so the 250-350 Ensure are his primary source of calories.

Last two chemos are scheduled for 8/16 and 8/23 and the PET is scheduled for 8/26. We did ask the doctor what happens if we still see cancer and he indicated we would likely do some more chemo. There are a couple new chemos that are coming on market so they may be an available option. Of course, the hope of hopes is that there will no longer be any cancer. We can then begin the process of rebuilding body strength and adding pounds!

Will let you know as soon as we do.

MaryDee

Subject: Re: Tuesday night

Date: Wed, 18 Aug 2010 00:23:02

I had a couple of bouts with nausea yesterday but doing better today. My last Fentanyl pain patch ran out last Thursday; I've had some mild abdominal pain off and on since then. I have an appointment with a gastroenterologist next month to discuss the celiac plexus block procrdure.

Yes, periodic PET scans will determine how things are progressing and whether additional chemo is warranted.

Subject: Re: Wednesday night

Date: Thu, 26 Aug 2010 03:15:01

Not a good chemo week. John has been throwing up since Tuesday evening. PET has been postponed. Think we'll hold off on the celebration til we know for certain we are finished. M

Subject: Update on John W 8-27-2010

Date: Fri, 27 Aug 2010 18:47:55

As you may remember last Monday was to be John's "last" chemo to be followed by a PET Scan on Thursday.

Unfortunately, John became quite ill with this chemo. He had more bouts of vomiting then any other time since starting chemo. We called RMCC on Wednesday and they recommended cancelling the PET. By Thursday he was spiking a temperature of 103 and had uncontrolable shaking chills. We went to the emergency room at Penrose where they did lots of blood tests and took several x-rays.

It turned out that he has pneumonia in the right lung. They gave him antibiotics at the hospital and sent us home late Thursday night with a prescription for more antibiotics.

He is home resting and says he is doing better. I would agree that he looks better plus his temperature has been normal all day. We are waiting for a call back for the rescheduling of the PET. Once that is done and we have the results, I will send out another update.

Thanks for all your prayers, support, and hanging in there with us!

MaryDee

Subject: Re: Monday night

Date: Mon, 06 Sep 2010 23:32:46

Pneumonia seems to be gone - caught it early. PET was rescheduled for last Thursday at 4:30. Friday evening they did not have the results so we hope to have them tomorrow.

Subject: John Status 9-10-2010

Date: Fri, 10 Sep 2010 23:08:09

It definitely took us a while to get the PET scan results. Several days of not having the results and then Thursday they called to say they had compared the PET to someone else's by accident. Finally called us Friday (9/10) with John's results.

The tumor on the head of the pancreas is shrinking. The spot on his incision (from December) is more active; no diagnosis on that for now but they will continue to watch. There is a possible kink or obstruction in the bowels (hard to tell from the PET scan); the doctor will do a CT scan in a couple of months. Dr. Markus gives a tentative clean bill of health with a couple of areas to watch.

While a perfectly clean bill of health would have been great, this report is definitely better than a report that there is more cancer.

So, no more chemo for now...blood test every month...PET scans every three months. We can definitely say praise the Lord and thank Him for the skills and knowledge of our medical team. Don't stop praying; He is hearing us!

MaryDee

Subject: Update on John 9/20 (two steps forward/one step back)

Date: Mon, 20 Sep 2010 21:13:07

Since the last update a couple of things have happened.

First, John broke the 4th toe on his right foot. Not that big of a deal except, as you probably know, there isn't much you can do except ice and elevate. He has one of those boots to keep the toe from bending. Doctor said about 4 weeks and he should be fine.

Second, and probably more substantial. John woke up around 12:30 a.m. on Sunday and was itching terribly. This is cause for concern for us since it was itching (from the liver bile backing up in the system) that brought us to the doctor that eventually led to the cancer diagnosis. Went to the ER at 4:15 yesterday and finally left at 10:00. The blood tests showed the liver count and bilirubin count were both elevated and thus cause for concern.

We had our monthly appointment today (9/20) with the oncologist. The counts are enough of a concern that the doctor ordered an untrasound for next week. It may just be a watch and see result but, obviously, it is better safe than sorry.

We also have the Celiac Plexus Neurolysis scheduled for October 5. This is where they will do an endoscopy and kill the Celiac Plexis nerve which should put a permanent end to the stomach pain and allow John to get back to normal eating habits and regular meals.

As usual, I will update you when I know something more.

MaryDee

Subject: John is in the hospital again...

Date: Sat, 25 Sep 2010 00:25:31

Last Sunday he began itching but didn't look particularly yellow; however, we continued to watch him and he is quite jaundiced now.

The RMCC had reviewed the lab work from Monday and ordered an untrasound which was done Thursday. The results weren't clear enough so they asked us to go to Penrose ER.

They admitted him this afternoon and he is scheduled for an ERCP at 8:00 a.m. Saturday. The results will determine the length of stay. They hope to put a stent in; however, aren't sure if they will be able to with the "re-plumbing" that was done last December.

This email went to just a few family - I will send an overall update when I know more later.

MaryDee

Subject: Re: John is in the hospital again...

Date: Sat, 25 Sep 2010 18:17:18

Morning ERCP didn't work due to the reconstruction. He goes down around 1:30 for an external catheter drain from the bile duct. It might be able to be switched to an internal one down the road but it is unlikely. Most likely the external will be permanent. MDW

Subject: John Status 9/26 - make that two steps forward three steps back

Date: Sun, 26 Sep 2010 09:43:22

Ultrasound: When John told the oncologist when the ultrasound was scheduled that wasn't soon enough for the doctor so he called and ordered the ultrasound for last Thursday (9/23).

On Friday (9/24) the doctor told us to get to the ER because the ultrasound wasn't clear enough to alleviate concerns. Also, however, by Friday morning John was clearly jaundice.

This essentially told us the liver wasn't functioning.

We got to the ER and they did another ultrasound and admitted him to Penrose Main Friday afternoon.

They did an ERCP on Saturday morning (9/25) with the intent to put a stent in his bile duct.

The reconstruction from the Whipple last December was such that they could not get to the duct via this procedure.

He was then scheduled for an external bile duct/liver drain to be placed Saturday afternoon.

There are two drains - one above and one below the obstruction. (We don't really know what the obstruction is and haven't seen the doctor since the 2nd procedure.)

If the liver/duct heal well there is a chance the external drain can be capped and he will have one internally that will do the job.

It is, unfortunately, less likely and he will most likely have the external drain for the remainder of his life.

I am getting ready to go to the hospital and hopefully haven't missed the doctor (they sometime like to go in early).

I will update when I know more.

KEEP PRAYING!

Subject: Update on John 9-29

Date: Wed, 29 Sep 2010 10:25:30

Well, they let John go home Tuesday afternoon. I had to be trained first on how to flush the drain. He says it feels weird because one is actually pushing saline back up into the liver. He is aware of the sensation of the coolness of the saline and the liver doesn't like it because it's supposed to be going out not coming in :~). So, now I am an official drain cleaner!

We go back to Penrose as out-patient on Thursday morning for a Coloangiogram. They will inject dye into the liver and bile duct area to see if things are looking better. They also, still have a concern about the intestinal loop causing problems (from the original whipple procedure). If things look good, and the internal drain is working well, they might cap the external drain on Thursday. For those of you who ask for specifics to pray for, that would be it. John was struggling with the idea of having this external drain permanently. He knows he will get use to it if he has to but would much prefer to leave as much to the inside workings as possible.

We are still scheduled for the celiac nerve block on October 5 which will hopefully take care of the pain when eating. He is still dealing with nausea when he eats however and we aren't certain if the block will help that or not. We do have an appointment with his oncologist on Monday to discuss this week's medical delights and will talk about that problem as well.

Thanks for hanging with us and keep those prayers going!

MaryDee

Subject: update on John 10/6/10

Date: Thu, 07 Oct 2010 22:32:27

Well, we are back in the hospital.

Went in Thursday morning for blood draw to check the bile. The white cell count was over 24,000. The biliruben was going up instead of down.

They ordered a CT Scan: bottom line: infection, suspicious nodules, bloodclot, interior bile drain plugged, bowel reconstruction still causing problems, and potential metastasis.

They took him then to replace the drains and determined that we will have to go in every week to have the drains replaced (both internal and external) and I will need to flush 3-4 times a day instead of 2 times a day.

Probably only major surgery will fix the bowel reconstruction problem and John would not be able to handle it based on his current physical status.

It is my understanding that our primary oncologist will be contacting us, but this may be my misunderstanding. We did meet with the Penrose Main oncologist on call - didn't get much information; very little was helpful. Tomorrow a different oncologist on call will come by so will see if we get better information from that one.

...will let you know...

MaryDee

Subject: Status on John - you may want to brace yourselves

Date: Fri, 08 Oct 2010 21:37:41

Some of you received phone calls; however, I can't call everyone and while this is a somewhat "cold" way to give you this information it is a quick way.

The oncologist today let us know that the cancer has spread to the lungs, stomach, and bowels. There is no chemo that can help with this fight at this point.

John has been given 4-6 months.

He is down in radiology as I type this to get the bile drain working/replaced. It hasn't been draining since last evening. It has been over an hour since they took him down and I am not sure what the status is. The primary purpose of keeping this drain working is to help keep the body working as much as possible without extensive nausea.

We are still discussing a feeding tube; however, the reality with this is, the problem with the bowels/stomach not processing food correctly would remain so we are looking at the possibility of TPN (intraveneous nutrition) but some hurdles have to be met for insurance to cover. We think John will meet those but we need to be certain before we can start that.

Needless to say, John and I are trying to process just what this all means and will likely be fluctuating around the various emotions that this brings. We ask for continued prayer - - and never say miracles can't happen because they can - - but we also believe in preparing for the direction God has asked us to walk. One day at a time and we plan on pushing the 6 month envelope!

MaryDee

Subject: John Status - Brace Yourself Part II (10-10-10)

Date: Sun, 10 Oct 2010 17:45:45

Things have changed over the last few days. The intravenous nutrition is not something that is feasible because the cancer is destroying the digestive system so, even if John was getting all the nutrition possible, the body cannot process it correctly and he will simply continue to lose weight.

As we discussed further with the doctor it seemed that 4-6 months was rather optimistic and we were correct. I happened to come across a medical report on John (definitely a God thing otherwise we would not have known) that the oncologist was giving us a 2-4 month prognosis. When I found it and discussed it with John we both felt this was probably more realistic based on what we were being told and what was being discussed.

Hospice cannot take John as long as our intent is to replace the bile/liver drain because that is considered aggressive health care (even though its primary job is palliative). We are waiting to talk to Home Health Care to find out about home care which could allow for drain replacement as needed and intravenous dextrose/saline. Hopefully, that will be something that is doable and coverable; otherwise, we may be looking at an even smaller window.

We will continue to take things one day at a time and one report at a time. Please keep hangin’ with us and praying for grace to deal with whatever else comes our way.

MaryDee

Subject: Update on John 10-12-10 at 6:30 p.m.

Date: Tue, 12 Oct 2010 20:30:28

Well this is the craziest roller coaster ride I have ever been on!

John has been dealing with more and more pain and nausea but we were still looking at going home today. I even had the bags packed; however, he started throwing up big time – this is saying something since he hasn’t been putting anything in his stomach to speak of. The nurse even wondered where everything was coming from…needless to say they called the doctor and John is staying in the hospital until tomorrow anyway. We will talk to the doctor tomorrow and reassess.

It does appear that things are moving much faster; that is the cancer is moving along rather quickly as well. We may discuss going back to the idea of hospice vs. home health care after all. God is in control and we ask for prayer that our necessary steps will be made clear and John can be as comfortable as possible through all this.

MaryDee

Subject: Update on John 10-14

Date: Thu, 14 Oct 2010 22:21:01

Well, yesterday (Wednesday) we talked to the doctor and decided to go with hospice. We left Penrose late Wednesday afternoon and John is currently at in-patient hospice with Pikes Peak Hospice at the old St. Francis hospital downtown (across from The Gazette).

The plan is to get his nausea and pain to a controllable level so we can bring him home. The room at home is ready (thanks to Ralph for his help) but I am going to be honest with you here and say that we may not get him home.

John becomes weaker each day. The drain is working as much as it can; however, he is beginning to retain fluid and the stomach area is bloating so it is probably putting pressure on the drain. He is not on IVs and the nurse says that IVs would really only be a hindrance at this point because of fluid retention.

If you want to come by he is in room 439; you may want to call my cell to make sure he is still here and not on the way home but I think it is a safe bet he will be here through Friday anyway.

MaryDee

Subject: Update on John 10-18

Date: Mon, 18 Oct 2010 15:12:33

We are still in-patient at Hospice and don’t know if John will be able to go home or not. This is moving pretty quickly.

Today is a fairly bad day but some of that may be due to the change in medication. He is still acute (their words) and when they change the dosage to try to get him comfortable it can cause him to be “out of it” for a while. Today he isn’t able to talk much and his focus is just trying to get some sleep and breath.

He eats very little now, usually just some sips of juice, water, or ginger ale off and on throughout the day.

I realize to some of you the abruptness of the email may seem off-putting but neither John nor I have ever been one’s to flower-up stuff.

Hoping for a better day tomorrow, MaryDee

Subject: John Status - going home...

Date: Tue, 19 Oct 2010 17:52:45

Well, he fought a brave fight; however, the cancer has won.

John did get to go home but it was the shortcut version to his home with our Lord.

He died this morning (October 19) around 6:15 a.m.

Hospice had called about 12:30 a.m. to let me know he was declining. Tim and I were with him for several hours. About 3:30 a.m. I told him I was going home to which he replied OK and I said I loved him and he replied the he loved me. It was a rare moment of lucidity by that point so I consider myself quite blessed to have had the conversation.

Funeral arrangements will be made with Swan-Law and we are hoping to have the service on Saturday, October 30 at St. Francis of Assisi Episcopal Church. I will send out an update with the final information once I have it.

My heart is gone; John was the best thing that ever happened to me and forever will be!

MaryDee


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