Home and Doing Well

Dear Friends and Family,
It's Jeff here wanting to thank everyone for your wonderful support over the past few months. I'm home from the hospital and doing very well. I'm taking it slowly because I'm still pretty sore. I went for a checkup last week and Doctor Royal said that I'm doing extremely well considering the type of surgery that I had. I'm getting real bored sitting around the house and I want to do more, but the Doctors warned me to take it easy for at least another week or two. I'm working from the house and plan on going back part time next week all contingent on my continued good progress. Linda and the kids are happy to have me home and to get back into the everyday routine. I've been taking walks with Nicki and getting my fill of ESPN. My next appoinment is in August for the usual CT Scans, blood work etc.. They want to check my progress and to determine our next step. We're miles from where we were in January! My blood sugar continues to remain constant and I'm feeling really good about my future! With your continued prayers and good luck from the Lord above we will triumph over this thing. I love all of you and please don't hesitate to call or stop by the house.
Love, Jeff

Looks Like a Saturday Discharge

Jeff's pain is under control and his appetite is starting to return....but we've had to ditch the hospital food and I've been bringing him food "from the outside" which he likes much better. He's allowed to eat anything he wants as long as it's low fat, low sugar, low acid, low lactose, and low fiber. I know it doesn't sound like much but the Chicken Noodle Soup from the Silver Diner was awsome and the soup from Bertucci's was even better. Jeff can have soft, easy to digest fruits (applesauce or bananna), breads and pastas as long as they are not whole grain, and sugar free foods when he wants them. He hasn't had too much of an appetite but that is getting better every day too.

Dr. Drennan, the on-call physician for the weekend, believes that Jeff can go home today. She's just waiting on Dr. Royal, Jeff's attending physician, to give her the approval for the discharge. Looks like neither of us won :( ....wait that's not true...we both win when he gets to go home. Brit and Brad want to see a movie today and if we don't wear Jeff out getting him home, I think he'll be game. We were talking about it last night and he was all for getting a day pass if he didn't get discharged. Now that's progress.

Sorry I haven't written the last few days. There hasn't been much to write about and I had to go into work for some important meetings on Wednesday and Friday. I can't wait to sleep in my own bed and get back to our normal routines. Brit and Brad spent last night here in Bethesda with me....I don't know who has missed them more....me or Jeff. Britt was hoping to visit the three story Borders Books again today but that may have to wait a few weeks. It sounds like Jeff will be released soon but he has to be back here on August 8th for tests and post surgery follow up.

Wife #2 took the weekend off to go to PA and see her family. Her Father-in-law is in the hospital and she wanted to check in on him too. I think she was also looking forward to seeing Charlie (her favorite pooch), making sure the pool wasn't green, and getting a break from the twin teenagers who have been a little bit of a hand full these last two weeks.

Ooops...I missed a day

Jeff continues to recover and rest. He has been able to take a shower (with some close supervision by me to make sure he's safe to stand alone and doesn't get his dressings wet), he's had the central line in his neck removed this afternoon (after they put a fresh peripheral line in his arm...he was not a happy camper about that since it took two tries), and started was able to have a clear liquid diet as of last night.

There is still no mention of when Jeff can go home but he and I are taking bets. He's thinking Friday and I'm hoping for Thursday. Of course, the doctors aren't telling us what they are thinking and they are the ones that count. I don't think they want us to rush. Dr. Royal said that Jeff is doing extremely well and much better than other patients with his type of surgery.

Jeff spends most of his day dozing off, taking walks around the unit, listening to cd's and watching movies with me. He's not up to reading yet and surprisingly hasn't complained about being bored yet. I think I'd go stir crazy if I was in his shoes.

Removing the lines

Today has been restful and productive (in a wierd sort of way). The Epidural line in Jeff's back has been removed and IV pain meds have been started. Luckly, Jeff hasn't had much pain at all thanks to the watchful eyes of the physicians and nurses here. The cathater in Jeff's bladder has been removed and his bladder is working normally. He's still on ice chips but hopefully he'll be allowed to have clear liquids soon.

Brittany, Brad and Sharon came for a much welcome visit yesterday. The twins stayed behind to spend the night with me in the Lodge and to extend their visit with Jeff this morning. It was such a nice day. We took several walks around the unit today and if I can get Jeff to take one final pass (his usual four laps) tonight, he'll have done a whole mile today. That's impressive!

Brit and Brad are back home safely again this evening and start their second and final week of driver's education training tomorrow. Brad did a wonderful job of driving the Beltway on his trip back home this afternoon and thank goodness the thunderstorms and rain held off until he was on 301. I'm not sure my heart could have taken a 16 year old drive on the Beltway in a thunderstorm and heavy rain....whew.

Well folks, another day at the NIH Adult Oncology Unit is behind us. Hopefully we won't have to be here much longer. I'll keep ya'll posted.

Getting Back Up to Speed

Jeff is MUCH better today than yesterday...still on ice chips but his color is back, his urine output is normal, and he has taken two trips around the unit today. They decided it wasn't a urinary tract infection but haven't given me anything really solid about what caused the downturn yesterday. They gave Jeff some extra IV solution and Lasiks (sp?) last night and some more Lasiks again this morning. Dr. Hinkstrum,the on call physician, wanted to get rid of any extra fluid Jeff may have and to flush his delinquent bladder. Between that and the rest he got last night (thanks to the anti-naseua medicine) he looks 10 times better than yesterday. He is still sleeping a lot but rest is a good thing right now.

Jeff's incision was "seeping" at his bellybutton today so Dr. Hinkstrum took out a few of the staples this morning. He also cleaned out the incision and then packed it with saline soaked gauze. The open incision looked like something out of CSI (coming from the CSI junkie that I am) but Dr. H. assures me that this will help heal this part of the incision from the inside out and prevent infection. FYI - The doctor's still haven't thrown out any discharge dates so we're not making any plans yet.

Jeff's roomate is on a weekend pass and the room is nice and quite....at least until the twins arrive.

Tough Day

Jeff is finally sleeping but he's had a pretty rough day today. When I came in this afternoon he didn't look well. His eyes were droopy, he was complaining of lower back pain, and couldn't get comfortable. The nurses and doctors were watching him closely and saw that his urine output had slowed down considerably and his urine was cloudy...it was the beginning signs of either a urinary tract infection or a blockage. It wasn't until 9:00 tonight that they could get a good sample to send to the lab for testing.

We are still waiting on the results but I'm pretty certain (based on just the few clinical skills that I have) that he'll need antibiotics for a urinary infection. The on-call doctor just doesn't want to treat him until they confirm a diagnosis.

Jeff's stomach is also a little distended and he has been throwing up a little this evening, both of which can be caused by the urinary infection. They gave him his favorite anti-nausea medicine which also happens to knock him out...and I'm happy to say that he is sleeping comfortably for the first time since I arrived today. With any luck he'll be back up to post-surgery par by morning.

The doctors also put Jeff on clear liquids then took them back away just a few short hours later and put him back on ice chips. It's amazing that he didn't complain...I'm not sure I would have gone back without a fight.

Brittany, Brad and Sharon will be here for a visit tomorrow and I'm sure that will lift Jeff's spirits. He's talked to both Brit & Brad every day and I'm sure their smiling faces will bring him great joy tomorrow.

Justin for those of you who haven't heard is back from deployment and in Hawaii. However, I got a voice mail message this afternoon that they are going on a short trip for the weekend and he won't be back on the island until Monday. He should be home in Maryland around mid-August and I for one can't wait to see him. It's been far too long since I've gotten to see or hug him.

Well folks, it's getting late and we've had a very long day here at NIH. I'll try to post a little earlier tomorrow so that you know how things are progressing.

Resting & Walking

Jeff continued to rest and recover today. His blood sugars have remained normal, his pain is still controlled with the epidural, and he has taken several walks around the unit today. He still isn't allowed to have anything to eat or drink but it doesn't seem to bother him too much. My guess is that by tomorrow he will be ready for something to eat. Dr. Greer, Dr. Royal's resident, said that if everything continues to improve Jeff can probably start clear liquids tomorrow. Of course, his options with clear liquids are pretty limited but I guess it's better than the ice chips he's enjoying now. They removed the dressing around Jeff's incision today and there is a little redness that they will monitor very closely. There still isn't any decision on how long we'll have to stay here but if I were a betting woman, I'd say we will get to go home on Monday.

Brit, Brad and Sharon (Wife #2) are all doing well. They have had a busy week with drivers education and "official" driving lessons. Perhaps the timing for the class worked out good after all. I think it gave the kids and Sharon something to do this week besides worry.

Back to 3NW

This morning when I arrived in the ICU to see Jeff he was sitting in an upright position and less than an hour later had walked to the Nurse's Station and back to a recliner in his room. A couple of hours later he did what I call the ICU Circuit (he walked from one end of the ICU to the other which is no small feat considering it was less than 24 hours since the surgery and the unit is pretty long). Of course, the epidural catheter was a big help and has really kept Jeff's pain under contronl. He progressed well through the morning and they moved him back to 3NW at 1:30 today (Yea!!!).

Before moving back to his regular unit where he knows most of the staff by name now, they removed all but two IV's, the EKG leads, and all the other acutraments (sp?) that come along with a surgical patient. Jeff's still not allowed to have any food, not even clear liquids but hopefully that will change soon. His blood sugars have been normal since the procedure but they will continue to monitor them every two hours for a while.

Drs. Pingpank and Royal said Jeff should be in the hospital for a week but that they will probably be giving him some time off from surgery and PHPs ... and perhaps a long time off....I heard mention of five years or more.

I don't want to get anyone's hopes up but since the primary tumors in/near the pancrease are gone and the liver tumors are dying, and Jeff's blood sugars are back to normal there isn't much more to do othern than monitor him. I can't tell you enough how happy that has made both of us...even if we are a little skeptical after everything we've been through.

Right now I think we'll do what we do best....take it one day at a time and let Jeff concentrate on getting off the epidural and walking around 3NW and Building 10 (our new winter/spring home of 2006).

Surgery is Over and All is Well

Jeff finished surgery about 15 mintues ago making it about a 10 hour surgery...whew what a long wait.

They removed the tail of Jeff's pancreas and his spleen leaving about 70% of the pancreas in tact, they also removed the "portal vein" tumors that were in the lymphnodes and not in the head of the pancrease, and did a biopsy of the liver. Dr. Royal said the tumors on the liver are dying and it looks like there is some scar tissue left. He also said that Jeff's stomach and intestines looked normal. The "portal vein" tumor (which we though was in the head of the pancreas but was actually outside the pancreas near the head) was much more involved than they expected but they worked their way through it and got it removed.

Jeff should be up in the ICU in about 15-30 minutes and resting comfortably. Dr. Royal said they were extubating him in the Recovery Room while we spoke (which was a good sign since they though he may have to be intubated overnight because of how long the surgery was). Jeff was given an epidural catheter to help manage the pain and I expect that he'll be able to rest virtually pain free until they remove the epidural in a few days. The physicians and nures will watch Jeff in the ICU for a couple of days before moving him back down to 3NW. Dr. Royal said they will need to watch Jeff's blood sugars very closely over the next few days as he may need insulin...that's a switch I know. Since the tumors are no longer producing insulin and his normal pancreas functions have probably stopped producing it because of the tumors, they will need to give him a little help until things go back to normal.

As promised, I will post everyday with an update. I don't expect to do more than say Hi to Jeff tonight, give him a long over due kiss, and let him know that you all are praying for him to have a speedy recovery before I turning in for the night. I know Jeff needs his rest if he's going to get better and back on the camping scene.

Checked into NIH

We have arrived at NIH and checked in with Admissions. Things are starting to move along but at a snails pace for today. The nursing staff have started the usual vital signs and admission assessments and are waiting for the doctors orders. Jeff can expect to be on a clear liquid diet and then no food by mouth starting later this evening. I don't think there are any further tests today .... just an IV and some rest.

It feels like home week here on 3NW. Several of the staff have already stopped in to say Hi and to get the latest update on Jeff's health over the past few months. The surgury is scheduled for tomorrow at 8 a.m. and I will post before and after the surgery.

Thank you everyone for you comments - it feels good to be "blogging" again. I thought I'd share Joe and Rachel's posting as it seems befitting for our situation...thanks to our many friends and family...whose support has meant everything to us. (FYI - Joe is a lifelong friend of Jeff's and lives with his wonderful wife Rachel in Utah)

What Cancer cannot do:
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
Iit cannot destroy peace
It cannot kill friendships
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
.....And it doesn't have a clue as to what it got into when it tried to mess with my friend Jeff!

(Thanks for the post J&R!)

Next Steps

Wow...has it really been almost a month since I updated the blog????? I'm terribly sorry. Jeff has been "feeling better in the past month than he has in the past TWO years." Imagane that!

We have kept a busy schedule during the last month since Jeff has been feeling so good and spring is in full swing. We camped at Point Lookout State Park a few weeks ago and Bethpage for Memorial Day (with the luau) and then took two short trips to PA on the weekends that we weren't camping. I think we both wanted to do some normal things while we could.

Jeff had his usual rounds of testing done this past Thursday and we met with Drs. Pingpank and Royal to discuss next steps on Friday. The good news is that Jeff's insulin levals are almost normal again, the CT of his the liver is still showing signs of getting better, the tumors on the pancrease are stable (not growing) and the spot on the brain is improving. They still believe that the spot on Jeff's brain it is a bleed/old injury that was made worse by the large amounts of blood thinners and the extremely low platelets when things were at their worse a couple of months ago.

Jeff is officially scheduled for pancreatic surgery on June 20th and that's what we were both expecting. He will have some pre-admission tests (octreotiede scan and another brain CT) next Thursday/Friday and be admitted on Monday the 19th in preparation for the surgery on the 20th.

The surgeons, Drs. Pingpank and Royal, both of who we deeply respect, said that it will a 4-6 hour surgery with a 7-10 day hospitalized reovery. By the time Jeff is discharged, he will be walking, talking, eating regular foods, etc. but moving a little slower than normal. They expect him to lay low for another week or so ( i.e., laying on the couch watching the big screen) but can start returning to normal activities as his body see's fit. He should be back to normal in 4-6 weeks and just in time for later summer and fall camping.

The doctors also mentioned that a third and fourth PHP may not be needed if the liver continues to improve. They won't know for sure for a couple more months but it sounds very encouraging.

During the surgery, they will remove the tail end of Jeff's pancreas (I think it's called a distal pancreatectomy) leaving about 60-70 percent of the pancrease in place. Then they will remove the tumor at the head of the pancreas...."The Godfather" as Jeff calls it since he's the guy who started it all (what an analogy)....the suspect lymphnodes, and possibly the spleen. They are also expecting to take a biopsy of the liver to confirm that the tumors there are dying.

I'll be contacting wife #2 and asking if she'll come back to the beautiful state of Maryland ... something that sounds like she's ready for....to help out with the kids. Even though they will be out of school, the are in driving school the week of the 19th and will both have summer jobs before long. Besides, they still need supervision and a driving coach...at least for a little while longer. I don't know what I would do without my sis!!!

Still on Holding Pattern

I'm sorry for the delay in posting - the blogger website had some sort of spam block on our site/posting. Here is the entry I made Friday but could not post.

Just a quick note to let all our friends and family know how today's clinic visit went. Drs. Pingpank and Royal think the spot on Jeff's brain is the result of bleeding and NOT a tumor. They believe that it is not an active bleed but the result of something old that may have bleed when Jeff's platelets were low. We will be repeating the tests again in one month and we'll go from there. We are still talking about surgery but can't move until the second round of testing confirms things. Looks like we'll get to camp for Memorial Day after all.

FYI - we camped at Point Lookout State Park this weekend...our ingural camping trip for the 2006 season (a little late but great none the less).

Change in Plans

This week was going extremely well for Jeff...he returned to work on a full time basis and his energy levels have been great...but read on. They stopped Jeff's Neupogen (helps make white blood cells) last week and all of his blood work was back to normal. We were supposed to go to NIH for testing and clinic visit last week but they postponed the tests/visit until this week beause of the problems Jeff had getting back to normal this time. This round of chemo took a lot out of Jeff and unfortunately they let his blood levels get too low before they got him back on track. Looking back,we think they should have ordered an out of cycle blood test when things started to decline. By the time Jeff had the next regularly scheduled test four days from the previous one, things were pretty low. Luckly he's a strong man and this too he fought back from.

As for this week's tests and visits, they have added a new wrinkle. Jeff had several tests this week including the ususal MRI and CT Scans, however, this time they added an Octreotide Scan. This was a nuclear medicine study where they inject a radioactive agent that is attracted to the tumors. When they take the "pictures" it lights up the places where the tumors are still hiding. The results of this test showed that there is still a fair amount of tumor activity in the liver and from the sounds of the physicians, I think it is either much more than they would like to see or they had hoped for no liver tumor activity after these two treatments.

The Octreotide scan also showed something in Jeff's brain that they weren't expecting. Therefore Jeff has to have an MRI for additional diagnostic testing. The doctors believe that it may be a false positive but cannot confirm that until the MRI is done. All other testing was normal except for a slightly elevated insulin level. As you may remember, the tumors produce insulin so this tumor activity is still reaking some havoc on Jeff's insulin/blood sugar. However, Jeff hasn't had to take any diazoxide since the last round of chemo and even with a low appetite, his blood sugars have been wonderfully normal.

As a result of the Octreotide Scan, the surgery that Jeff was scheduled for on May 17th has been posponed. He is scheduled for an MRI of the brain on May 9th and we go back for a clinic visit on May 12th. It is the May 12th visit that we'll know the results of the MRI and what the next course of treatment will be.

Oh, did I mention that we met Dr. Richard Royal during our clinic visit on Friday. Dr. Royal is the surgeon who will be doing the surgery on the pancreas...eventually... we hope. Both Jeff and I really liked him and his bedside manner. He was very straight forward, explained things very well, and answered all of our questions.

For now, all we can do is wait and let Jeff get his strength back. He' has lost over 30 pounds in the last four months and the delay will give him time to recover a bit before the next stage. Right now we just don't know if the next step will be....surgery, another round of chemo, or something yet to be determined.

Still Recovering

It's been a busy couple of weeks. Jeff's recovery is extremely slow this time. He ended up back in the hospital last Monday because his platelet count was EXTREMELY low. After 24 units of platelets they decided to keep him overnight and give him two units of red blood too. All that and double the dose of Neupogen (for the low white blood cell counts) helped get things back to normal and he was allowed to come home on Tuesday. I think he made the hemotology record books with counts that low.

Jeff was feeling pretty much like s..t for the last 10 days but things are starting to improve. We actually went out to dinner tonight after dropping the kids off at their friend's house. What a treat that was. I can't tell you the last time the two of us dined alone.

Jeff had his regular blood work done today and we are able to stop the Neupogen but his platelet count is low again. I don't have to give him the injections anymore (one per arm each night was starting to get old) but they want to monitor what's happening with the platelets for a couple more days. They, the wonderful doctors at NIH, have officially cancelled Jeff's follow up tests scheduled this coming Thursday and his clinic appointment this Friday. I think they want Jeff to have a little more time to recover before even considering surgery. I couln't agree with them more. This round took it's toll on him physicially and emotionally.

Please keep your get well wishes and cards coming. They have been wonderful to help lift Jeff's spirits and remind him of all your love and support. Even the kindergarden class at J.C. Magill Elementery School in Loganville, Georgia has adopted Jeff and sent him some of the most colorful and uplifting messages we've seen (Thanks Ms. Connie & Class of 2018!).

How the Week Went

Before I update everyone, please note that the last four digits of our home telephone number have changed. Our new home phone now ends in 9749. All the rest of the digits will remain the same. I'm sorry to change the number in the middle of all this but we wanted to change our phone service to Voice over IP and we couldn't keep our old number. I'll also send out an e-mail with the new number and if you call the old number in the next 90 days you'll get a recorded message of the change.

Jeff has been home resting and healing from the last PHP. His week started out with some pains but they have subsided. He has to have blood tests on Mondays and Thursdays to make sure his red cell, white cell, and platelet counts stay normal. By Thursday he was really dragging and very fatigued. The blood work came back showing that his white blood cell count was extremely low. I rushed home from work and gave him an injection of Neupogen which is supposed to help. He'll have to stay on the daily injections until his white blood count returns to normal. I don't know if that will be a few days or a few weeks. The protocol nurse said that he also has some anemia and may need to have a transfusion at some point. For now we are just giving him the daily Neupogen shots and some extra iron to help with the anemia.

Jeff's appetite is extremely low and he doesn't feel like eating much. He's said that he doesn't want to eat anything that requires a lot of chewing ... I think it makes eating too much like work and work wears him out fast these days. Wife #2 has been sweet enought to run for the Wendy's Milk Shakes in the middle of the day if he asks for one. Jeff explained that food just doesnt appeal to him. Not even pizza, our typical Friday night fare!

The blood sugars seem to be back to normal. Jeff hasn't taken any medicine for the hypoglycemia since he was admitted to NIH and they have been within the normal range every time he takes them....even withtout eating very much, they have remained normal (yea!).

Resting Comfortably at Home

Jeff had a rough night with nausea last night and Drs. Drennan & Hughes thought it best to keep him around the hospital a little while today. They gave him some anti-nausea medicine which knocked him out for the better part of the day but by 4:00 p.m. he came around and felt better. It wasn't long after that he was showered, shaved, and discharged to home. We were lucky not to hit any of the D.C. rush hour traffic on the way home and we managed to make it home in time for pizza (much better than hospital food) with Wife #2 and the kids.

Our plan is to have lab work done twice a week, more tests (CT, MRI and another Otreotide Scan) on April 20th and a clinic visit on April 21st. If all goes well, we'll schedule the surgery for the removal of the tumors from the pancrease. Right now though, we have to concentrate on Jeff getting his strength and appetite back. I'm happy to report that he has barely eaten for the last three days, he has not taken any of his hypoglycemia medicine and has not had a blood sugar below 80 (yea!!). We'll be making an appointment with the Bethesda Endocoinologists next week to see if we can stop the hypoglycemia medicine since things seem to be much better than when it was prescribed.

Well everyone, it's been a long day....we're off to sleep (in our own bed again...whew). I'll see if Jeff will do tomorrow's post.

Resting Comfortably at 3NW

Jeff moved back to 3NW around lunch time today. They've removed all of the catheters and IV's except for the central line in his chest. He's been really tired today and has had bouts of a headache, fever and chills. Dr. Drennan and Dr. Hughes said the fever is from his body killing off the tumor cell on the liver. He hasn't had much of an appetite but managed to get in part of a chicken pot pie for dinner tonight. Jeff watched a Red Sox Spring training game against Cincinnati this afternoon and listened to (or should I say slept to) an Eagles CD. Not much excitement here today...just healing, sleeping, and chatting. We took a stroll (Jeff in a wheel chair with me pushing) around the 1st, 3rd and 7th floor of NIH earlier this evening just to pass some time. We found the Chapel and the patient library and stopped into both for a few minutes. If all continues to go well, Dr. Drennan said Jeff can go home tomorrow...something we are both looking forward to. It's not that we don't like NIH ... we just want the big screen back!

2nd PHP Today

Jeff is awake, alert and doing well this evening after his second PHP at NIH. This round of treatment went similiar to the first but this time the doctors were able to give Jeff the whole dose of chemo instead of just 2/3. The filters still had a problem but they were able to run the "circuit" at a higher flow rate and for 10 minutes this time instead of 7 as they did previously. Jeff didn't retain as much fluid this time around and his nausia from the anesthesia was much milder. He spent his afternoon sleeping comfortable...and snoring loudly. I stood guard over his bed and refused to let anyone wake him since it's the first time I've seen him sleep so soundly in what seems like months. Dr. Drennan just removed the catheters from Jeff's leg and neck about 30 minutes ago and he's had his first few sips of water before I left his ICU room to let everyone know what's going on. Although he wasn't sitting up as early as the last time, I think the rest did him some good. We are planning on watching American Idol together this evening and by morning he should be sitting up and eating normally.

In case I haven't mentioned it yet, Dr. Pingpank wants to do the surgery to remove the pancreatic tumors before the next PHP/Chemo treatment. Dr. Pinkpank (the surgeon who heads up the protocol that Jeff is on) and I discussed the surgery at length today and he does not believe that it will have to be too invasive. He said Jeff could expect to spend about 7 days in the hospital and that he would be up walking and eating normally before going home. Within a couple of weeks after the surgery he should be able to return to work with limited hours.

Wife #2 arrived on the scene last Saturday with Charlie (her favorite pooch) in tow to help manage the Minghella household while we're here. Mike (Sharon's real husband) and Mr. Bill (Sharon's father-in-law) came to visit for a few days also and we were able to have a nice visit before they headed back to PA yesterday. For those of you who haven't seen the Jeff's new hair doo (or lack of it), please be sure to scroll down and check out the handsome man I'm married to :)

The New Doo

Sorry it's taken so long for a photo! I've been waiting to get Jeff on his way to work (with a dress shirt & tie) but haven't had any luck. Unfortunately I leave the house way before he does lately. He also has not been very cooperative because he doesn't like the new look as much as I do. I think it's absolutely handsome! Here's a photo of him doing what he likes to do best lately ...... watching sports on the big screen!

As I mentioned in my earlier blog, Jeff will have his second PHP this Wednesday. I'll post each day while he's in the hospital to keep all of our wonderful friends and family updated with what's going on.

Today's Clinic Visit

Jeff had a CT of chest, abdomen, and pelvis along with lab work this morning at NIH and we just finished our first clinic visit with Dr. Drennan and Dr. Hughes. They reported that the procedure has had a positive effect on the liver tumors (they are starting to die) and that the pancreatic tumors are stable (not growing). His blood work is good and everything is set for our second procedure in a couple of weeks. Jeff will come back to NIH on March 21st for the pre-procedure testing which will include an MRI. If everything still looks good, the second PHP will be done on March 29th followed by 24 hours in the ICU and a day or two in the Adult Oncology Unit (3NW) here at NIH. Since Jeff's blood sugars have been normal since the first procedure, we are hoping not to have the extended stay this time. Dr. Hughes explained that there is no way to tell if Jeff's platelets will cause problems with the filters again but they will adjust the procedure accordingly again if needed. Unfortunately, there isn't any way to tell if his blood counts/platelets will react the same again or not. We'll just have to continue taking things one day at a time

I apologize for not updating the post this week. We are trying to get life back to a somewhat normal status and as everyone knows, that means long hours at work, time with the family and maintaining the household. Jeff's spirits have been better than normal this past week. We completely shaved Jeff's hair/head on Tuesday and it looks MUCH better...it's soooo handsome!!! He's still trying to get used to it but it gets more comfortable for him as each day goes by.

We also celebrated Brittany & Bradley's 16th Birthday this past Wednesday. It's hard to believe that they are growing up so fast. Brittany is counting the days until she can get her provisional drivers license. She is so looking forward to getting past the stage of asking for rides to dinner and movies with her friends. Brad is planning for the upcomming paintball tournament and has decided to use the money he received for his birthday to buy a much needed "hopper" for his paintball gun. He's pretty much decided that playing paintball is much more important than driving.

Home and Hairless

Jeff came home from NIH yesterday and today he started to loose his hair (a lot)...something that we didn't expect. The kids and I quickly gave him his favorite "cruize" haircut...you know, the "haze gray and under way" buzz cut (a number 2 blade all over). I think we both underestimated how emotional it would be.

Jeff is resting comfortably in front of the big screen this evening. His lab work has been good and the blood sugars have continued to be in the normal range (yea!!). He has regained some of his appetite and color (he was pretty pale the last two weeks) but he has lost a few pound....10 to be exact

Wife #2 went home this afternoon to check in with her family and Charlie (her favorite dog). I think she's a little home sick (understandably) and that she's forgotten how much fun raising teenagers can be (times 2). We are hoping that she'll come back for round two. Thank you Mike, Sarah, Andy, Bill, Charlie & Snickers for sharing this wonderful caregiver with us.

Well folks, it's been a long week for me at work and my extra curricular duties as nurse and beauticean have made me tired tonight. I'll post again this Sunday so please check in for more updates. FYI - Jeff is scheduled for a CT and MRI next Thursday and we see Dr. Drennen next Friday. Dr. Drennen will go over Jeff's results to see if the procedure made any progress on the liver tumors and she should start planning/preparation for the next round of chemo at the end of March.

In case I didn't mention it earlier, we have hung all of your cards and get well wishes on our front door...just like we do every year at Christmas. They have been really helpful in keeping our spirits up.

Thank you Tim Duffy and Deb Arellano for getting Jeff home from NIH yesterday...as I've said in my previous posts...I don't know what we would do without friends like all you!

Still here at NIH...but getting better

Dr. Drennan reported that Jeff's white blood cell count is improving and based on the platelets he received on Saturday, they too should be good. He's still a little anemic but they are monitoring that closely and are giving him IV Antibiotics. Dr. Drennan said that Jeff could expect to be in the hospital in a couple more days. I think he's just enjoying the luxury of laying in bed all day and watching the soaps..now that the olympics are over... there's not much else on TV. His appetite is starting to return (it must be because he said even the hospital chicken pot pie was good...of course it could be the drugs) but his fatigue is still lingering. I'm sure he can't wait to do this all over again in a few weeks. Jeff's blood sugars continue to be in the normal range (whew) and we should know how successful the procedure was when he see's Dr. Pingpank next week.

Brittany & Bradley (Phil & Lil as Cousin Kathy lovingly calls them) are holding up well...that is of course until Jeff finds out that Brittany brought home a "D" in chemistry on her interim report card today....so much for her driving lessons. I've been able to get back to work for the time being so that I can take time off when Jeff really needs me. Since he's sleeping his day's away at NIH just recouperating and he has a full nursing staff to take care of his every,....almost every whim....he doesn't need me hovering over his bedside asking how he feels every 30 minutes.
Wife #2 (Sister Sharon) is still holding down the "fort" and keeping the household running smoothly through all of this. She has been a blessing to have watching over things for us. Justin hasn't written or called in a couple of weeks but I'm sure he is busy defending freedom somewhere across the ocean. Please keep Justin and Jeff's brother Jim in your prayers as they both fullfill their call to service.

So much for being home

Jeff was admitted to NIH again last night because his platelet count was too low. His blood work from Thursday was a little concerning for the physicians at NIH so they ordered a repeat test on Saturday. When those results came back, they asked Jeff to come in for a platelate transfusion.

Jeff finished up the transfusion around 9:30 p.m. last night but then had a fever and chills. Since his white blood cell and red blood cell count was low and he had a fever with chills, they didn't want him to come home last night. The doctors and nurses are worried that he may be exposed to something and get sick because his body's natural defensive mechanisms aren't working right now.

They did both blood and urine cultures again last night and will have the infectious doctor see Jeff today (Sunday). We don't expect him home before Monday and while he's there, they will probably remove his pic line. As I understand it, the pic line is something they don't want to leave in too long if it's not necessary and it can be the cause of an infection. Since Jeff doesn't need the IV at night any longer, it's probably comming out.

I will post to the blog daily while Jeff is in the hospital. For those of you who check the blog regularly, I'm sorry that I didn't post more frequently last week. Getting back to work, keeping up with Jeff, the twins and the house kept me (and Sharon) a little busy last week.

Our first week back at home

Thought I would add a photo of Jeff from one of our camping trips last summer.

What an interesting week's it been .... Our home health nurse arrived on Monday evening and showed us how to hook up the IV on Jeff. As I mentioned earlier, they want this to help keep his blood sugars normal overnight. Everything went well considering none of us are nurses :).

Jeff's started to feel a little better by Tuesday and was able to work from home. I returned to work and Sharon (Wife #2) was able to stay here and help keep an eye on Jeff. What would we ever do with our friends and family! Jeff still hasn't had much of an appetite and is very fatigued. Working from home has allowed him to take a couple of naps throughout the day and that seems to help.

Jeff has to have blood tests two times per week until he goes to the doctor on March 17th and he got his first tests done this past Thursday. Unfortunately, his white blood cell count was extremely low. The staff at NIH said this is normal from the chemo/procedure, and had sent us home with Neupogen...an injection that he needs to have for seven days until his white blood cell count returns to normal. The home health nurse came back on Thursday to change the dressing in Jeff's pic line and she gave the first injection. I gave the second one on Friday and to my amazement, Jeff said it was better than the home health nurse (he is so sweet to lie like that :))

Dr. Pingpank stopped the IV after Monday night and Jeff's blood sugars have been AWESOME! The only dip was on Monday morning and it was 70...a far cry from the mid-20's we have seen earlier. Since then, he has had blood glucose levels 80 and higher even with the reduced appitite. By Friday night, we didn't have to get up and test his blood sugar or eat a snack in the middle of the night. Perhaps he'll start to get a good night's sleep soon.

Everyone who has posted comments on this blog, shared it with friends or family we haven't had time to reach, sent e-mail, gifts and cards, called and prayed has been the reason we are able to make it through this difficult time. What an amazing show of support and strength for us! I don't think Jeff or I really understood just how many friends we had made in our lifetime....and we can't forget all of our family members who have been by our side despite their distance (Texas, California, Pennsylvania, Tennessee, Florida, Massachutes, Utah, Nevada). THANK YOU for all you have done!!!!!!!!!!!!!!!!!!!!!!

February 27, 2006 ...Day 7 at NIH & Going Home

Jeff has officially been discharged from NIH today....YEA!!!

He will have to have blood tests every Monday and Thursday as they monitor his white blood count and liver profiles. We'll be back at NIH on 3/16 for an MRI and CT scan of the liver with a subsequent clinic visit the following day. After our clinic visit on 3/17, we will know when/if Jeff will have the second procedure. They are also planning on stopping the night time IV beginning tomorrow night but then Jeff will have to get up at 2 a.m. for a snack. Dr. Drennan explained that Jeff's insulin was 19 this morning (within normal range) and it was 198 when we first arrived. They don't want to get your hopes up...but either the PHP procedure or the diazoxide is helping.....whew!!

Now we just need to work on the low grade fever, loss of appetite, and low energy levels and things will be somewhat normal again. They have checked Jeff's blood and there are no signs of infection so he either has a touch of the flu or symptoms from the chemotherapy. We will also need to follow up with our Endocrinologist at Bethesda to find out why the Lutenizing hormone is low....but things are looking good for the first time in weeks.

I will continue to update the blog but probably not more than once or twice a week. Feel free to continue to post your comments and/or questions. We have loved reading them all and thank you all for your support through these difficult times.

February 26, 2006 ... Day 6 at NIH

Yesterday I was able to convince Jeff to go to a movie with me. Dr. Pingpank agreed that the fresh air would do us both good. Rema, Jeff's nurse quickly made sure that we had all of the supplies we needed, glucometer, tylenol, thermometer to monitor his temp, etc. Rema has been taking care of Jeff for the last three days in a row from 7:30 a.m. until 7:30 p.m. and she has been absoutely wonderful. She's paged the doctor when we had questions, changed the dressing in the pic line, and always makes sure that he was comfortable. Jeff mentioned this morning that he'd like to introduce Rema to Justin.

We used the Internet at Jeff's bedside to find the Landmark Theater in Bethesea along with directions on how to get there. It was about a 5 minute drive from NIH and to our surprise, the theater had stadium seating. It was a small theater that plays independent films tucked away on a sidestreet with 8 movie screens and a consession stand that served gourmet coffee and lattes along with the traditional fare. We saw Brokeback Mountain and were both very surprised at how good the movie was....in fact, after the movie was over, no one stood up to leave their seats. Of course, we enjoyed our date away from the hospital more than anything. It's been several months since we've actually gone out by our selves and saw a movie.

I left the hospital around 6 p.m. lastnight and got a good night's sleep in my own bed but I'm going back this morning with Brittany and Bradley in tow. I think Bradley is driving to he hospital and Brittany is driving back from the hospital as they both need to get their driving hours in. I talked to Jeff this morning and he was up eating breakfast. His last blood sugar was 130 and they decreased the amount of dextrose in his IV from 10% to 5% last night. His blood sugars yesterday before the movie (and with out the IV since 7 a.m.) was 84. Before we returned to the hospital it was 107 as the hotdog and popcorn are good foods to help keep them where they belong.

I'm trying to talk Jeff into another outing today for lunch with the kids...wish me luck. I know that we are all looking forward to getting him home on Monday and perhaps get things back to normal for a while before this all starts again.

February 25th, 2006 - Day 5 at NIH

We've made some progress...although it's slow going. The cathetar in Jeff's neck was removed yesterday and the pic line was put in his arm. He's back on the diazoxide for the hypoglycemia along with the IV of 10% Dextrose. His blood sugar ranged from 140-160 last night but they've started to drop when the IV was removed this morning. The plan is to keep Jeff off of the IV today, allow him to control his blood sugar with regular small meals, and monitor him throughout the day. They plan to put the IV back in overnight to help keep the blood sugars stabalized and better controlled for in the morning...which is when his blood sugars takes a nose dive. He was up and eathing breakfast when I got in this morning and as soon as he takes a shower and gets dressed we'll take a few laps around the building. FYI - we are not confined the room or nursing unit. The hospital is in a 10 story building with an adjacent building connected by corridors. I've tried to talk Jeff into hopping on the Metro and cruizing into D.C. for a movie but he's said he's not quite up that yet. Perhaps I can convince him to do that tomorrow when I bring the kids in. Having a weekend or day pass sounds like it's something easy to arrange.

February 24, 2006 Evening Post - Message From Jeff

Dear Friends and Families,
I can't begin to tell you my overwhelming emotions when it comes to your love and support. It's been a pretty tough week for me but I'm getting better. This journey has taken me way out of my element and I can't wait to get back to my same old self. This will take some guts and determination with some devine intervention to get through and I am confident I will. There's too many things left to and most of all I have the best wife and kids in the world that keep me going. Please share this website with all because your words of encouragement mean alot me. I love and miss all of you and remember to keep the faith! I have the best Doctors in the country and please say a prayer for them as well.
They are keeping me here until Monday in order to get my blood sugar back on track. I'm sitting here with my lovely bride eating Pappa John's pizza and wishing you all could be here to share it with me. Take care and God bless.

Love,
Jeff

February 24, 2006 ... Day 4 at NIH... Morning Post

This morning we are just waiting around for the "pic" line to be done...Jeff's scheduled to have it done at 1:00 p.m. He's resting comfortably and we did several laps around the rather large nursing unit for exercise. As soon as the pic line is done, Jeff can take a shower and eat (yea!). It's amazing how the small things become important when you're in situations like these. So all is well today...Jeff continues to get better and will be homeward bound soon :)

I found this on the Internet while passing the time...though you might enjoy it as well:

"Just as spring's role is different from that of fall, so each of the seasons of our lives has a different emphasis, focus, and beauty... We cannot skip ahead to experience the richness of another life season more than a farmer can rush the spring."
Unknown Author

February 23, 2006 - Day 3 at NIH ... Evening Post

We've finally been moved to 3NW (5:30 p.m.) ...yea...that's progress.! Jeff stayed in the ICU a little longer than we expected because of his low blood sugar. It was nothing like yesterday but they had to give him the liquid syrup again (50% Dextrose) to get him back to normal. Other than feeling like "he's been hit by a Mac ... strike that... Dodge Ram Truck", he's doing pretty good. He hasn't eaten much during the day but Marie, his evening nurse, and I convinced him to have some chicken noodle soup and jello. With the aid of a sleeping agent tonight and the absence of bells and alerts from the ICU, he's hoping for a good night sleep...after American Idol of course.

Dr. Pingpank and Dr. Drennan, the surgeons who performed the procedure, stopped in before we left the ICU. They think they want to keep Jeff in the hospital until Saturday and monitor his low blood sugars a little longer. They have also asked Dr. Gordon, an Endocrinologist, to see Jeff tomorrow. As of right now the plan is to give Jeff a "pic" line so that he can have an IV during the night with 10% glucose. That seems to do the trick with keeping his blood sugar stable.

Thank you to everyone who has posted comments. Jeff really enjoyed reading them and hearing from "the outside." It's comforting to know that you're all there! Jeff sends his love and wanted everyone to know that he appreciates your support. I'm hoping that he'll take over this blog when he's feeling a little better.

February 23, 2006 - Day 3 at NIH...Morning Post

Jeff is doing much better than he was last night. The nausea is gone, the pain in his abdomen has reduced, he's sitting up and eating breakfast (toast and scambled eggs with O.J.....very good for a patient in the ICU who usually just gets liquids). Last night we watched American Idol and Jeff got in hours of the Olympics after I left.

The doctors were in early this morning and have discharged Jeff from the ICU. We are expecting to be moved back over to 3NW later this morning. Jeff's blood sugars are starting to drop a little but they are watching them closely and allowing him to control them with normal food instead of injecting him with the equivalent of liquid syrup (50% Dextrose).

The IT staff have gotten us access to the NIH wireless network for Jeff's computer and I don't think it will be long before he steals his laptop back from me :).

If all goes well today, we can expect to go home tomorrow (Yea!). Jeff and I both miss Brittany & Bradley (and the big screen) very much. Thanks to my sister Sharon (Wife #2 as Jeff lovingly refers to her), the kids have been able to keep their normal schedule and sleep in their own beds. Their cell phones have paid off this week as I was able to keep them both posted on his status via text messaging. The doctors are surprised at how "connected" we are....thank goodness for technology :)

As I mentioned in my previous posting, we won't know how effective this treatement will be for a few more weeks and unfortunately, we'll have to go through this whole process again. I'll need everyone's help convincing Jeff why he should go through this experience again.

FYI - I've changed the set up options to allow comments to be posted. Sorry for the oversight!

February 22, 2005 - 1st Procedure Complete

Jeff is out of the procedure and resting semi-comfortably in the ICU at NIH. He had some nausea from the anesthesia and some pain as they were removing the catheters from his legs but they have given him some pain meds and he's feeling a little better. He should be out of the ICU and back on the Adult Oncology unit sometime tomorrow. They will be keeping a close watch on him for the rest of the night ...he's in very good hands :)

February 22,2006 ....Day 2 at NIH

Today started out a little rough....Jeff's blood sugar was at 32 when I arrived to the hospital at 6:00 a.m. They increased his IV to 10% Dextrose to see if that helped but by 6:30 a.m. his blood sugar was 27...he was sweating, confused and had double vision. They were able to give him 50% glucose in his IV and that helped bring him back around.

Dr. Pingpank and his fellow, Dr. Drennan, were in this morning. Jeff has signed his consent to participate in the study and have the procedure done today. We had a very long discussion with Dr. Pingpank last night and learned that the primary concern right now is the liver because there are so many tumors. They also believe that the tumors on the liver are also producing/secreting uncontrolled insulin just like the tumors in the pancreas but because there are so many of them it is reeking havic on Jeff's blood sugar. If left untreated, the liver could eventually fail but it is important to know that his liver function tests are still in the normal range right now (good news). This procedure should help with the tumors on the liver and then they can focus on the pancreas.

Last night we also learned that there are very few options for the liver tumors right now, and this is the primary treatment. If this doesn't work, they may refer us to the Pittsburg for a "microsphere" chemo treatment. Dr. Pingpank explained that through the procedure we are having today, they can give higher doses of chemo than if treated the normal way (meds or IV) and that this method does less damage to the rest of the body because of how they filter out the toxins in the blood during the procedure.

They do not expect to Jeff to have any nasea or hair loss from the chemo, however, he will spend some time in the ICU after his procedure. Mainly because of the catheters they will be putting into the veins in his legs and neck. He should be moved back to the 3NW (Adult Oncology) unit tomorrow and discharged on Friday if all goes well.

Dr. Pingpank expects to give today's treatment and then have Jeff back for follow up tests and a second procedure in four weeks. He said that we could expect to have four treatments and that two of the patients that they have treated with neuroendocine tumors (but not insulinoma) have had complete response from this treatment. That's encouraging news!

To date, Dr. Pingpank has treated over 50 patients with this new method and already proven chemo agent and given between 150-200 of these types of treatment with promising results.

The staff here at NIH have been absolutely wonderful. I did not realize what a large healthcare facility this was and how important their research studies were. Yesterday the Social Worker arranged for me to stay at the at the Safar Lodge while Jeff is hospitalized and it's on campus and is within walking distance of the hospital (literally across the street). There is a cafe in the lobby that serves latte's (not Starbucks but close enough) as well as a cafeteria that is open from 6:30 a.m. to 7:30 p.m. Jeff has a tv and computer with the Internet and he's already logged into work for a few minutes.

Well folks...Jeff should be going downstairs for his procedure soon. I'll add another post as soon as he's out of the procedure and comfortable in the ICU. Please keep us in your prayers!

February 21, 2006....Day 1 at NIH

Today Jeff was admitted to the National Institutes of Health in Bethesda Maryland for his screening protocol...basically to see if he's healthy enought to participate in a clinical trial (Percutaneous Heptac Perfusion or PHP). If all goes well today, the doctors here will do a procedure tomorrow to inject a chemotherapy agent directly into his liver and filter the blood before putting it back into his body. This helps target the liver metestasis and keep the toxins from the chemo out of his body. He can expect to be admitted to the ICU after the procedure and sent home on Friday.

If all goes well, the chemotherapy will reduce the liver tumors enough for surgeons to remove the tumors in the pancreas later on. It may take a couple of these treatments before they will consider surgery for the primary tumors.

How the Journey Began

Nine months ago...everything was normal....Jeff retired from the Navy, finished his Bachelor's Degree (Magna Cum Laud), and landed a great job at Anteon. Little did we know that everything would be turned upside down in just a few short months.

The 2005 camping season ended and Jeff began to feel fatigued. He started having some minor pains in his right side around the Thanksgiving and Christmas Holiday but nothing that caused too much concern. He also started having symptoms of hypoglycemia (low blood sugar). When the pain returned and the fatigue got worse in mid-January, he went to the St. Mary's Hospital ER. They didn't find anything abnormal and referred him to his primary care physician (PCP).

In mid-January 2006, during the follow up visit with Dr. Bhavsar, Jeff's PCP, he was given a glucometer to monitor his blood sugar and the doctor ordered an ultrasound of the liver. The results showed several lesions on his liver and therefore, a CT of the abdoman was ordered.
It was this CT that showed a very poor picture....a 3 centimeter tumor in the head of the pancreas and metastistic lesions covering 50% of his liver. We quickly got a referral to Bethesda Naval Hospital for additional testing.

It was early February when Jeff spent a week at the Bethesda Naval Hospital. He was in great hands there as his testing was overseen by Dr. Kurland, a gastroenterologist, a team of internal medicine and endocrinology physicians and residents, and Dr. Dorrance, our new onologist. They diagnosed Jeff with a two malignant insulinoma tumors (only one showed on the CT) .....a very rare insulin producing tumor. So rare in fact that only 1 in 4 million people per year develop this type of tumor and of those, only 10% are malignant (cancerous)....like Jeff's.

Our oncologist quickly began looking for clinical trials and referred us to the National Institues of Health in Bethesda, Maryland, for follow up and possible participation in a study. Unfortunately for us, there are not a lot of case studies for patients with this type of cancer and traditional treatements (chemotherapy, radition, etc.) have not been very effective. However, the good news is that this type of tumor is usually slow growing and not as aggressive as the "bad" type of pancreatic cancer. Of course, the term "bad" is relative and has a whole new meaning for us.

We monitor Jeff's blood sugar regularly now and have had a few episodes that scared us. We have all learned to watch for the symptoms (confusion, trembling, etc.) and make sure he eats every 2-3 hours to keep his blood sugar from getting low. Despite taking medication and eating regularly, he's still having problems keeping his blood sugar at an optimal level (80-100).

Thus begins Jeff's journey to see what treatment options are available.
Our friends, family and co-workers have been so awsome through all of this and are to be commended for their continued support. We feel truely blessed to have such a wonderful support system and are most thankful for everyone who has placed Jeff and the family on their prayer chain at church. Please keep us in your prayers as this may be a long journey....