Got to ER by 11AM, checked into ER room by 1115 and saw the ER Dr. By 11:30 I got an I. V. and pain shot. in my ER room. Pain shot really helped bring pain down from 3-4 to a 1, but after an hour I could feel the pain slightly more so I asked for another pain shot at 1pm. So here I lay, still waiting in the ER room, waiting for them to take me up to a hospital room. I still have not seen the ER Dr. since 1115 Nurse just told me they will do a CAT scan in the 10 minutes. The Nurses say the ER is very full, I can hear the doors open and shut to the ambulance bay very often which my room is right next to the ambulance bay.
2pm, still waiting in ER room for them to come get me for a CT scan So I finally get brought down to CT to get the CT scan. The nurse or whomever, is standing beside me with a clipboard and before I climb aboard she has to verify all my past surgies apparently. She starts with verifying my appendix and gallbladder, then quizzically askes and then you had some surgery in Mexico? I had a “Puestow” I reply “P, U, E, S, T, O, W” then I explained what it was. I felt like asking if the handwriting was really that bad that she could not read it any better than than that, but I did not. I just let it go and almost laughed in my pain induced tired of waiting state. Another lab tech quickly took over the rest of the CT.
230- Just got back from CT, they took me back to my ER room. results from CT should take 30 minutes + infinity to actually have the Dr. look at them. I predict that I will still be in the ER room at 3 or even 3:30 3:30 Heather and Selah came and found me in the ER room. I got another pain shot, pain is at level 2 but feeling pretty good. ER doctor popped in for the 2nd time since I met him at 11:15. ER doctor said the CT scan showed enlarged pancreas head, which is what you would expect to see. He also noted that there is some small cysts? on the liver. He said they will be admitting me. I'll follow up with more questions about the CT scan.
4pm saw the Dr. that will be admitting me and he confirmed I will be admitted.
4:50 pm still waiting to be admitted ER Nurse confirms my room will be 121B 5pm Brought up to 421B and begun to check in 5:40 finally finished checking in and given pain shot and left alone Admitting Dr. is Dr. is Dr. Sahid (sp?). He usually comes in the morings between 9-10AM, but of course it can vary. The nurse in the morning will have a better estimate of the Dr. rounds schedule 6:15-Heather and kids found my room and brought a few supplies for me. Answered a lot of questions for kids about the bed, IV, gown, etc…
7-7:45 Marion and Wanda also came and said “hi”. Room got a bit crowded.
7:55-Got a roommate, after he got checked in, he settled into watching TV on his side fairly quietly, although I don’t mind it too much. He must be an older man here for some heart related thing. He got a cold turkey dinner.
8:20PM pain shot, nice night shift nurse, she told me I can get the pain shot up to every hour if I want and for me to just ask.
Synopsis of day: Spent all day in ER hospitable bed in a room right by the ambulance bay doors, that I could hear open and slam shut every time someone came in or or out from the ambulance. Pain shots did help. Remained pretty alert throughout the day just to not miss details or information. CT scan showed swelled pancreas, but again they don’t really know as compared to what? They have no baseline for my pancrease size. Saw some calcification which is to be expected. Dr. did mention cysts on liver, but really did not seem that concerned about that. Googled cysts on the liver and many of the reasons are benign.
10:10 PM Got another pain shot, which I foiund out are Morphine. I had been getting Fenergram for nasua along with the Morphine but over the last 2 or so shots I declined the fenergram, but now for this dose I took the option for Fenergram again as I did feel some nausea. So I will stick with the morphine/fenergram combo. The nurse said the morphine only relieved the pain for about 35 minutes or so and I can ask for it every hour. I’ve had a headache that also had been building up since 3-4 PM, and I finally got some Tylenol drip after some weight time. The nurse had to call in authorization for Tylenol via IV which took extra time. The Tylenol trip did not want to drip right but eventually she got it. She had to call over another nurse who is my bedmates nurse who incidentally is someone heather and I know from our CF Church days. I was too tired to really say hi to her and just let her do my job, I’m pretty sure she probably would remember my name and knows who I am, but is being professional. I can ask the Tylenol drip it every 6 hours.
Date 4/4/14-Friday Night shift: Pain shots 12AM 130 245 430 630 Never did ask for the Aspirin drip again, felt headache was OK now and did not want to burden liver down or add other medicines. I really liked the night nurse, Carla, who’s shift ends in the next 30 minutes at 7AM, they work 12 hour shifts here. Carla was so nice, very motherly to me, very attentive, and quick. She got me extra blankets, an extra fan even with the room was hot, she was always ready with pain shots. She was caring and nice. She even brought me ear plugs when she could see I was trying to rest and the roommate had his TV on. Roommate's TV is not really that loud, but it is just another drowning sound in a sea of unfamiliar that can add up. It is not like it is is loud, but I do wish he’d turn it off throughout the night. Apparently he does not sleep much, but it is hard for anyone to really get deep sleep here amidst all the checking and bells and lights on and off, but Carla was nice. She had her own flashlight to not hurt my eyes. You could tell really loved being a nurse, or she faked it really well. She was ready to hear all about my Puestow and Gallbladder surgery, when it came up in conversation, but in the end I had no real need to tell. I told her I was afraid the Dr’s would push food too fast today. She told me I had the right not eat it or do what I thought was best basically. She was a good nurse and we shall see what the day holds in a few hours. I told her I really appreciated her care and attention before she left her shift.
7AM 4/4/14 The day nurse is Jennifer. She was the same one on last night when I came onto the floor at 5:40. 9:30 Nurse Jennifer came to take vitals. Said pneumonia shot recommended for those with history of digestive disease, so shot will be sent up. Temp 98.4 Shot in stomach to prevent leg clots from forming. Hospital protocol from laying in bed.
9:50 Sherri the dietician came to ask questions. Will start him out with clear liquids. ?? At some point, not sure when?
10:05 Nurse Jen changed IV bag
10:10 Nurse practitioner Amy Pointon came. Dr Ouseph, GI specialist, planning to come later today. CT scan spots on both kidneys. Called urologist and he will take a look at it and come talk to Jason today. 2 GI guys are partners for the Goshen area. GI guy and urologist will both come today. Dr. Ouseph may want to do an endoscopy. Potential for the spots, might need to get a biopsy. Don’t know how or why spots on the kidneys came up, if related to pancreatitis or not. Dr. Shaheed will not be coming. He was the admitting doctor. Dr. Bouldan (Urologist) possibly coming during lunch hour. Homogenous lesions is name for spots on kidneys. No connection to diabetes. Massive amounts of Gatorade would not affect the structure process of the kidneys (just the filtration process). Lesions are a structure issues, not a processing issue. Kidneys are functioning just fine, just have an abnormal structure on them. To clarify: whatever Jason heard about spots on the liver must have been a miscommunication because there is no report of anything about spots on the liver.
10:30 Chaplain came
10:35 Dr. Ouseph, GI specialist Concerned about enlarged head of the pancreas. Want to compare with previous CT scans. CT scan looks like a cyst on kidneys (he said, although the NP Amy used the formal word “homogenous lesions” when asked. Normally head of pancreas is homogenous and smooth. Jason’s is about 5 cm. sometimes seen in chronic pancreatits. Might want to do an MRI to look at the ? duct and other parts of the pancreas. Might recommend biopsy via endoscope. Does not go through skin, small needle takes samples. Might do MRI as a first step. Food is up to Jason. He would try to contact University of Iowa Hospitals and Providence Medical Hospital for any past pancreas imaging (CT scans, MRI’s, Ultrasounds) so that we could establish some kind of comparison base line with the enlargement my pancreas is currently showing now.
12 noon Nurse came in and gave the pneumonia shot, I will just need a booster in 5 years. Shot in left arm shoulder, might be sore.
Notes to self: 1:05- John D Abad, MD - surgical oncologist. Consulting partner of Dr. Ouseph came. Abad handles more the cancer side of GI issues and Ouseph handles the standard non cancerous GI issues. Blood test tomorrow morning-Order a tumor marker-# -EUS-CEA19-9 tumor marker. Gives a number that predicts cancerous outcomes or not. Dr. Ouseph-ordered pancreatic endoscopic ultrasound on Monday to biopsy the head of the pancreas. Procedure may take 30 minutes. This will biopsy the head of the pancreas to determine if it is cancerous or not. Dr. Abad will come back to check in latter to answer more questions.
1:30-Blood draw guy came to get blood-not sure what specific factor in the blood they are looking for, it seamed that 2 things were ordered in the lab • Found on webmd: Using certain pain medications for a long time. This includes over-the-counter drugs in addition to prescription drugs can cause kidney cancer http://www.davincisurgery.com/da-vinci-urology/conditions/kidney-cancer/ • A kidney tumor is an abnormal growth in the kidney. The terms "mass," "lesion" and "tumor" are often used interchangeably. Tumors may be benign (non-cancerous) or malignant (cancerous). The most common kidney mass is a fluid-filled area called a cyst. Simple cysts are benign, do not turn into cancer and usually do not require follow-up care. Solid kidney tumors can be benign, but are cancerous more than 90 percent of the time. Kidney cancer can form in the small tubes inside the kidney. Those tubes are located in the center of the kidney where urine collects and used to filter blood. The most common kidney cancer is called renal cell carcinoma.
2:45 PM Dr. Jeffrey Bolduan, M.D.-Urology & Genitourinary surgery 1615 Winsted Drive Ste 4 Goshen, IN 46526 1800-201-8765 fax-574-533-3909 -Coming to talk about my kidneys at some point. -They will not investigate getting a biopsy of the kidney until I’m discharged from this current hospital episode and they will schedule an out patient procedure at a later date in which they take a needle into my back-into the kidney to take biopsy. It will be very important for me to get all past medical records from the U of I, IA and Providence Medical Center, AK, to have to compare to my current pancreas state, especially records containing MRI, CT, or ultrasound images of the pancreas or kidneys 4:30-John D Abad, MD, surgical oncologist, came back Confirmed that the endoscopy on Monday to take biopsy will not/should not enflame the pancreas. There should be no repercussions in pain or flare up from the procedure.
5:50 PM No pain meds all day. Last pain meds were at 6:30 AM. 9PM-I sit here after a long day in the hospital listening to Shiny, Shiny Black upon which the “C” word has been thrown on the table: Cancer. The album expresses the fear, sadness, questions, longing, and dare I say, even HOPE, that my true shock and inability to comprehend CAN’T truly express. Cancer is possibility in my life. Tests will be run Monday, but even then I’m not out of the woods with full knowledge until follow up appointments can be made. “Oh, Darlin, Only God can save us now” has never felt more apt. ---------------------------------------------------------------------------------------------------------------
Saturday 4/5/14 I had a good night and got much better sleep, much deeper and longer sleep. I did ask for some pain shots which I was surprised at considering how well I felt and how mobile I was during Friday. But when I sat alone last night just trying to focus on sleeping my pancreas still was there, a low level 1-2 pain, but enough to thwart sleep. So got morphine at: 11 pm 230 AM 5- just tylenol IV drip, nurse wanted me to try it, even though I really just wanted morphine 530 morphine 630 wanted another morphine, but at that point it was too late to rest, so I declined. I'm really don't feel the pain unless I really focus on sleeping/resting.
It dawned on me that since I'm scheduled for a endoscope/biopsy of the pancreas head on Monday along with an ultra sound that they will not advance any food with me until after the test on the Monday. That is just the way they do things, I'm sure if the test were not scheduled that the Dr's would be pushing me to start clear liquids and food so they could send me on my way even if I was not ready for it. It turns out the Dr's do rounds here on Saturday and Sunday, although I'm not sure which Dr's will actually do rounds. So far I've seen 2 GI Dr's and 1 kidney Dr. + NP.
Heather, twins, and Selah all came around 9:15 just as the "respitory therapy guy" "taught" me how to use my asthma inhalers. The twins were a little taken back at first, strange guy with daddy, daddy in bed, they just stared, but once the man left I got out the room chair and recieved the cards they all had made for me and we taped them up on the wall. I took Solomon in the bathroom and showed him how I can pee on the toilet even with an IV and how I have to not let my gown fall in the toilet because it doesn't really fit. He seemed interested. The twins were really interested in climbing on the window sill. Solomon was standing in the sill using "one hand" I'm not sure if this fits visitor behavior protocol. Selah was intent on finding an iPad video on "how IV's work" after my suggestion, but was not finding anything.
After they all left at 9:50, I found one for them that they can view when they return from Selah's Violin lesson.
11:10 heather and kids came back along with a Dr. (fill in for admitting Dr. Shahid). The fill in Dr. said that I could progress on liquid diet now, but at some point Sunday even/night they would put me on a fast again for the Monday Endscopy and Ultrasound. This surprised me that they would be willing to progress my diet even with the test coming up. But I quickly ordered my food at 11:10: chicken broth, 4oz apple, cran berry, and grape each, gello, hot tea, 353 calories, 1239 sodium
12noon- John D Abad, MD - surgical oncologist came by around 12 noon also, he just checked me out. He had no new news or details. He seems by far the most friendly Dr. with best bedside manner. He let Solomon listen on his stethoscope. Bev Benner also popped in shortly as my meal was coming. She did not stay long. her visit was just right. Food came by 12:15 and I quickly ate it by 1230. It felt good to eat again even if just liquid, time will tell if it aggravates the pancreas. Heather and kids left by 110, to go to Pastor Deron's (wife Annette and kids Alena and Marta) for the afternoon till 4pm or so. Heather should be coming back sometime. The kids liked the family room. It seems mostly vacant most days/times and when we come we take it over. Solomon and Analise were crawling under the chairs looking for "hiding places."
I might need to work on the kids empathy expression a little bit: I asked "who is having a good day" like I do at times with the kids. The kids mostly said they are having a good day. I asked Solomon, "why is your day good?" He said, "I'm having a good day because your sick!" "Oh, I said, well then is anyone having a great day?" Solomon said, "I can have a great day when I'm sick!"
115-130 PM pretty intense bowl movement, gassy and diarrhea, with floating nuggets as well. This really surprised me since I just downed some liquid diet not hardly an hour ago and the last "food" I had was a little chicken on Wed. 130PM then 2 eight oz. cans of ensure 9PM Wed. Although, the bowl could have been from the ensure more than anything since those things pack so much nutrients and even fiber into a small package. Felt good have this episode over with. So far I don't feel aggravation from the drinking the liquid diet as far as the pancreas goes.
Heather came back after dropping off the kids and stayed from 2:30-4ish, to go pick up the kids and then take them all to her Mom's and eat supper. She then planned to leave them their a bit after supper and come back to the hospitable. Thank God for Grandmas and Grandpa's!!
Heather commented once recently how she misses that her Dad never got to see her kids, because she knew that he was a real kid person. She remembered her dad playing with the kids in the nursery back at their old home church. He really loved and interacted with even little kids. I had not heard too much about that from Heather before.
Also while Heather was here, I ordered my 2nd meal of the day: 1 chicken broth, 2 apple j, 2 grape j, 2 berry jellos, 2 fruit ice, and hot tea. It hard to believe all this is only 575 calories, but then again it is not really that filling.
Also, while Heather was here I asked my nurse, Tonya, if she knew Dr. Boulan that well and if his bedside manner was a bit rough. Tonya as we discovered this morning
Just as Heather was leaving Ed Benner came to say high. We had a nice talk, told him all my health history and concerns. Talked a lot about our love for the outdoors and biking. I seemed to connect with Ed and offered some ideas for his recumbent bicycle.
5pm. Just ordered my supper. 5:11-wow supper just arrived. Apparently my 2 jello got translated over the phone to 4 jello. I will work on this throughout the evening no doubt.
No sign of Dr. Ouseph. Who knows if he will make rounds today?
5:50
A good part of my liquid dinner has been "liquidated" internaly shall we say. I got 2 apple j, 2 grape j, 2 jellos that got translated into 4 jellos, 2 beef broths, 1 hot tea, 1 ice fruit-- a day smashing 790 calories if I can eat it all!
I'll save 1 of the broths and tea for later, I decided for some variety and beef instead of my usual chicken.
8 15 PM
Feeling like I may have been a bit overzealous on the liquid diet today, feeling more pancreas pain once I settle down into bed and prepare for the night. Heather came around 6:30?? and stayed till 8pm. Derron our pastor stopped by (our kids were at his house with his kids and wife today). It was very good talk to Derron, he mostly listened, but we covered a lot of ground, a lot of spiritual matters I had and concerns on my mind. He prayed for me and I appreciated it.
Blood pressure was 152/94 which I'm told is relatively high, and mine has been running a little high the past few readings throughout the day. I'll have to look up blood pressure ratings again.
I suspect several pain shots will be needed to get me through the night. Last night was very restful with pain shots I usually slept solid for 2-4 hours and got 3 shots if I recall from my last notes. I also changed roommates today. I was roommate - less for a couple of hours late afternoon. The new roommate seems quieter overall, at least his TV is. I'm resigned to the fact that I will sleep with ear plugs in situations like this, it doesn't bother me, and I'm OK with that.
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Saturday Night 4/5
Last night was not a good night at all. I pretty much didn't sleep a wink, first because I just couldn't forget about my pancreas pain, even after 5 Morhpine shots on the hour. Then starting at 3:30AM I switched to a heavier hitter pain shot that I could have every 2 hours: Dolotin. Dolotin definitely wiped out the pain and thought I prepared to drift off into a deep sleep, but I just never did. Then at 530AM I took another dolotin and again I stayed up pretty much the entire time.
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Sunday 4/6/14
But this morning Heather and I got one of the nicest email and prayers to date from a guy at church. I will definitely be meditating on this prayer and using it to strengthen me.
Dear Jason and Heather,
It is hard to imagine the range of feelings you may be experiencing as you face the unknowns of a changing health status while also trying to stay on top of family and work responsibilities. I am very sorry for the path you are walking but very glad that you are in good hands medically and in the ultimate good hands spiritually. May you feel deep shalom in those almighty and all-caring hands even though the diagnosis and implications are not clear. And, may you find deepest confidence in one another as a couple facing this together. Isa. 59:1 "Behold, the Lord's hand is not shortened, that it cannot save; neither his ear heavy, that it cannot hear."
Dear God, You, alone, are mighty. Your reach exceeds the ends of this universe. In Your hand, the worlds are held together. Yet, You see and hear your child, Jason, and hold him tenderly in Your care as a parent for a newborn. Lend him confidence in Your care and inspire him with a profound trust that all shall be well with him. Expand his sense of peace that passes understanding and transcends circumstances. Carry Heather, Your daughter, as if on eagle's wings. Grant her endurance for the ways she compensates for Jason's absence from home and family. And let her glimpse and taste and even bask in and feast on the awe of Your sustaining grace this very day and in the days to come. Speak order to the cells of Jason's body that they may function as You designed them to when You looked on Your original creation and pronounced it GOOD. May all of this be SO through the power of Jesus' saving name. AMEN!
With you in Christian Love,
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10-12 Heather and kids came by and Trina
before lunch- John D Abad, MD - surgical oncologist came by
1230-Dr. Shahid admission fill in Dr. guy came by- did not really do anything but listen to me my back and stomach breathing. He does not seem that helpful.
1PM Kay Bontrager Singer came by and we talked in the family room
1:30-3 Adam F. came and we talked and caught up on many things. It was a good visit.
4:16
Dr. Nush came by and explained somethings:
Calcification consistent with pancreatitis. Dr. Ouseff went over the biopsy 5 times and did not find any indication of cancer or any reason to suspect cancer but of course we will wait for the final report to confirm this. CT scan measured the growth and 3 cm and the ultrasound measured it as 5 cm. This can be normal for pancreatitis. Jason will need ongoing follow-up in the future but there is no real guideline as far as what procedures are used for early detection of cancer in pancreatitis since it is so rare. Heather clarified at least 3 times where to have U of I paperwork faxed to, it's all rather confusing but finally figured out to have it sent directly to his floor where DR. Ouseff will get it and it will be put in his file. Yes, today's results will be used for future comparisons. Janet called Dr. Ouseff's office did not have paperwork from I of U. Janet is the GI nurse. Very helpful. ----------------------------------------
10-12 Heather and kids came by and Trina
before lunch- John D Abad, MD - surgical oncologist came by
1230-Dr. Shahid admission fill in Dr. guy came by- did not really do anything but listen to me my back and stomach breathing. He does not seem that helpful.
1PM Kay Bontrager Singer came by and we talked in the family room
1:30-3 Adam F. came and we talked and caught up on many things. It was a good visit.
4:16
Dr. Nush came by and explained somethings:
Von hippel landau (vhl)- name of disease that connects pancreas
and kidneys lesions
The kidney biopsy will show if connected to vhl. The determination of if the kidney is benign
or malignant does not effect the connection to vhl.
When asked, "Is the bigger question/risk at this point still the kidneys in terms of the cancer risk?" He said not necessarily. The big question is now the pancreas.
4:30-Blood pressure 122/78 -- very good - I wonder if this is because of all the visits, activity, and prayer today. Just feeling a general sense of well being, even though my head does hurt a bit from a headache.
5:30-
Got tylenol IV trip that is supposed to last 6 hours, this was just for my slight headache.
8PM- Heather was here and Pastor Derron and Kay came over to do the anointing ceremony. I had talked earlier about doing the activity in the family room as it seemed like that room was mostly vacant, but D and A confirmed on their way in that people were using that room, so we used my room and that worked quiet sufficiently. My roommate was quite pre-oppucied with his Nurses and girlfriend so he did not overhear anything. It was nice, Derron placed the oil on my forehead and D and K each prayed 1-2 times. It was pretty short and sweet really.
830PM
177/77 BP, pulse 48
Informative info site on Pancreatic Cancer: http://www.cancer.org/cancer/pancreaticcancer/detailedguide/pancreatic-cancer-detection
At midnight I will be on NPO diet in preparation for endoscopy
Night Nurse informs that the endoscope and ultrasound will be at 1030 AM
11:22 PM - Already have been sleeping off and on since 9PM with lights off, room ate quiet, and headphones on listening to Shiny, Shiny Black. Maybe ready to to just fall asleep wiht out music now. No pain or any feeling felt in my stomach. Got emails back from Prince of Peace Church people, they prayed for me at church.
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Monday 4/7/14
530AM- Slept like a baby all night long, felt so good to sleep
pulse 53
800Am
respiratory therapy came in with inhalers and woke me up
still sleeping solid
815
149/78 bp
Once during a John D Abad, MD visit he mentioned:
When asked, "Is the bigger question/risk at this point still the kidneys in terms of the cancer risk?" He said not necessarily. The big question is now the pancreas.
4:30-Blood pressure 122/78 -- very good - I wonder if this is because of all the visits, activity, and prayer today. Just feeling a general sense of well being, even though my head does hurt a bit from a headache.
5:30-
Got tylenol IV trip that is supposed to last 6 hours, this was just for my slight headache.
8PM- Heather was here and Pastor Derron and Kay came over to do the anointing ceremony. I had talked earlier about doing the activity in the family room as it seemed like that room was mostly vacant, but D and A confirmed on their way in that people were using that room, so we used my room and that worked quiet sufficiently. My roommate was quite pre-oppucied with his Nurses and girlfriend so he did not overhear anything. It was nice, Derron placed the oil on my forehead and D and K each prayed 1-2 times. It was pretty short and sweet really.
830PM
177/77 BP, pulse 48
Informative info site on Pancreatic Cancer: http://www.cancer.org/cancer/pancreaticcancer/detailedguide/pancreatic-cancer-detection
At midnight I will be on NPO diet in preparation for endoscopy
Night Nurse informs that the endoscope and ultrasound will be at 1030 AM
11:22 PM - Already have been sleeping off and on since 9PM with lights off, room ate quiet, and headphones on listening to Shiny, Shiny Black. Maybe ready to to just fall asleep wiht out music now. No pain or any feeling felt in my stomach. Got emails back from Prince of Peace Church people, they prayed for me at church.
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Monday 4/7/14
530AM- Slept like a baby all night long, felt so good to sleep
pulse 53
800Am
respiratory therapy came in with inhalers and woke me up
still sleeping solid
815
149/78 bp
Once during a John D Abad, MD visit he mentioned:
A substance called CA 19-9 is
released into the blood by exocrine pancreatic cancer cells and can be
detected by blood tests. But by the time blood levels are high enough to
be consistently detected by available methods, the cancer is no longer
in its early stages. This is why the test is not recommended for routine
screening of people without symptoms or a known diagnosis of cancer.
The CA 19-9 test is sometimes used during treatment to see if the
therapy is working or after treatment to see if the cancer has recurred
(come back).
Another substance, carcinoembryonic antigen
(CEA), can help detect advanced pancreatic cancer in some people. But it
isn't sensitive enough to find the cancer early and is not recommended
as a screening test.
I will have to ask him about this more, after reading this the test is not all that great because it would show late stage cancer if the CA 19-9 marker was present. Not a good thing. I cannot remember if he just mentioned because I like information or if this test woiuld be something they would do sometime.
9:30-10:00
Got all washed up and read for the day, shaved even! Feels like I'm getting for a date, with out the spiffied up clothes.
1030-Took me down from my room to the endoscopy room. I felt like I as spruced up for the date. My calendar his morning said were going o Chicago, so I guess that is were I'm headed. I even shaved. Heaher and I both went down and they had nice little waiting rooms wit h good msd
11:10
They took Jason back for the endoscope/biopsy/ultrasound/whatever. Said he will be groggy and it may be up to an hour before I see him and/or he comes out of it. Jason reminded me (Heather) that in high school he went running the evening after an endoscopy. Heather is waiting back in the windowless GI area, but the decor is better here and they are playing contemporary Christian music, which is kind of nice. Their idea of decor in Jason's room is an outdated blood pressure cuff hanging on the wall.
In endoscope room, had nastly spray stuff put in my mouth, and gagged. Put on fully left side. Last remember the clock listing 11:15.
next memory is being wheeled back to room with Heather and Nurse Jenn (Jenn is very nice as was with me when CRASS Dr. buouldan explained my kidney options if a very blunt and non professional way.
1:23 PM, back in my hosp. room feeling groggy, whent to teh bathroom 2x with assistance to bathroom.
Questions
How big is the swolleness or the growth on the pancreas?
Anyway to tell if fast growth/ slow growth or just the way his pancreas is?
Any way to tell if cancerous?
Did they take a biopsy? Why or why not? We thought they would take a biopsy.
Clarify that the ultrasound is internal? Ultrasound part of the scope?
This procedure will give better pictoral documentation for future reference?
Will Jason have these procedures more frequently or others once under the care of GI specialist?
approx. time 12:10 PM report to Heather from Dr. Ouseff9:30-10:00
Got all washed up and read for the day, shaved even! Feels like I'm getting for a date, with out the spiffied up clothes.
1030-Took me down from my room to the endoscopy room. I felt like I as spruced up for the date. My calendar his morning said were going o Chicago, so I guess that is were I'm headed. I even shaved. Heaher and I both went down and they had nice little waiting rooms wit h good msd
11:10
They took Jason back for the endoscope/biopsy/ultrasound/whatever. Said he will be groggy and it may be up to an hour before I see him and/or he comes out of it. Jason reminded me (Heather) that in high school he went running the evening after an endoscopy. Heather is waiting back in the windowless GI area, but the decor is better here and they are playing contemporary Christian music, which is kind of nice. Their idea of decor in Jason's room is an outdated blood pressure cuff hanging on the wall.
In endoscope room, had nastly spray stuff put in my mouth, and gagged. Put on fully left side. Last remember the clock listing 11:15.
next memory is being wheeled back to room with Heather and Nurse Jenn (Jenn is very nice as was with me when CRASS Dr. buouldan explained my kidney options if a very blunt and non professional way.
1:23 PM, back in my hosp. room feeling groggy, whent to teh bathroom 2x with assistance to bathroom.
Questions
How big is the swolleness or the growth on the pancreas?
Anyway to tell if fast growth/ slow growth or just the way his pancreas is?
Any way to tell if cancerous?
Did they take a biopsy? Why or why not? We thought they would take a biopsy.
Clarify that the ultrasound is internal? Ultrasound part of the scope?
This procedure will give better pictoral documentation for future reference?
Will Jason have these procedures more frequently or others once under the care of GI specialist?
Now waiting for Jason to return to his room.
Jason returned ?? forgot to look at the clock, but sometime between 12:15-12:25. Jason was helped by 2 aides to the bathroom, took a long time to pee. A nurse and I helped him back to the bathroom. He is not to walk on his own for 4 hours (4:30). Things Jason said for later reference. I don't know if he was being funny or loopy:
Something about tabs and spellcheck and how it helps him spell
After Heather asked where the menu was for ordering clear liquids:
"I made a brain map of my room so I can remember where everything is."
12:50 "How did I get into this bed?" "I went to the bathroom first?" "Did I pee a lot?"
Asked multiple times about what sedative was used.
"Did you put my glasses on?" (10 min. after Jason put them on).
3:10-Feeling a bit tired groggy
John D Abad, MD dropped in quick when Heather was out and I was about to talk to bathroom byself
3:30 PM
120/80 BP, Pulse: 53
Day was blur of recovery after the procedure. Dr. Ouseph said preliminary findings indicate no cancer. It will take 3-4 days for the full report.
Apparently I was quite a hoot coming off of anastesia and making it back to my room, talking about all number of subjects with surprising coherence. It is nice to know if I ever quit may day job, that with a little anesthesia that I could be a stand up comic or the life of any party.
6-7
Ate my first full liquid diet (not clear liquid):
2 choc puddings
2 yougurts
1 tomato soup
1 skim milk
1 orange juice
Tried to really eat it slowly over an hour or so. Felt good to eat. The tomato soup was surprisingly good, the warmth going down was such a good feeling. The hospital room is cold right now.
7:30
Jason Moshier came to visit, it was good talking to him
7:40
Jacob and Rachael finally got here and looked a little road weary, but glad to be here. They left around 9pm, I know the kids were exited to see them.
It has been a very good day. I'm still feeling no pain from the full liquid meal. I hope to have a good night. My throat is a little sore from the endoscope, but nothing terrible.
Had another great night's sleep. Only woke up a couple times to pee. Got a little cold and asked for a warm blanket. Around 3AM I could feel a tenderness in my pancreas, not pain, just a tenderness an awareness. I hope this is not foreboding of what is to come from last nights full liquid meal.
=============================================================================
4/8/14 Tuesday
The unofficial word by the nurses is that I will go home today if I tolerate the full diet. So far I'm still on full liquids. I feel a tenderness in my stomach. Ordered same full liquids for breakfast as I ate lastnight: 2 puddings and yogurt, tomato soup, milk, plus grape and apple juice. I slowly working the breakfast down
9:30 AM Dr. Shahid came.
Dr. Ouseph office or Abad will set up appt. to discuss the results of the biopsy regarding the head of the pancreas.
Dr. Bolduan (urologist) will set up an appt. regarding lesions on the kidneys. They could get an MRI. To get a biopsy, they will send Jason to the IR dept., Intervention Radiology (?). They will take pictures with a CT scan to figure out where to get the biopsy from, but will not take a biopsy from every lesion, especially if they appear similar, but from the biggest lesion. Reduced function of the kidney is measured by lab reports for creatinine. Jason will be discharged today, will continue to progress with solid food on his own at home. Dr. Shahid did confirm that yes, it's a possibility that people can function with partial kidney function but stressed that they do not know yet and we need to know what is going on, he cannot say it is nothing, he cannot say it is something.
10:10 AM Betsy, who works with Dr. Abad came. Repeated the same things Jason's heard since he was 15 about not eating fatty foods. Asked if he would like help with a low-fat diet. Major offense to the cook! Repeated that we are waiting for the pathology report. The report could be back today, or could not. If pathology is back before he is discharged, Dr. Abad will come back and if not, Dr. Abad will schedule a report at the cancer center to discuss it with you. If it's normal, then follow up with Dr. Ouseph would be the course of action to take. If it's not normal, Dr. Abad will look into surgical options. If it's normal then we can skip Abad and go with Ouseph. Betsy listened to heart & lungs.
Jacob stayed with me in the hospital and Heather went back home. Mom was with the kids a good chunk of the morning. I ordered lunch of tomato soup, 2 bagels, 4 yogurts, cereal, plus extra milk. Seemed to tolerate it OK, stomach (pancreas) still tender.
Dr. Abad himself actually came up, just in time to see the wasp in the window... Jacob smashed it to everyone's relief. Dr. Abhad did not really say anything new. He did reiterate that my appointment with him over Ousef did not indicate that the findings from pancreas were cancerous in nature.
Discharged around 12:30 and left with Jacob. Felt good to be home. For remainder of day nursed diluted ensure drinks to gain back nutrition and strength in the body. Ran 2.5 miles on the mill race, felt very slow and weak, but tenderness in stomach seems maybe slightly less. I fell asleep on the couch earlier in the afternoon. Jacob left back for Iowa around 3:30 or so after taking Mom to Walmart earlier in the afternoon.
What I have learned.
Undoubtedly this has been a roller coaster week of emotion. The thought of having cancer has always been a far off and surreal proposition that despite my increased statistical risk with pancreatitis, has never seemed real. It was something I knew cognatively, but never emotionaly. In my mind I still am that superman youth who can do all things and conquer any project or goal if I simply put my mind to it. This week was a reminder that despite how strong my mind remains, my body will fail me... will fail everyone at some point.
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Wednesday 4/9/14
Slept well. So nice to be in one's bed again, in one's house. Tummy still tender throughout the night and morning. Seemed to get less tender as day went on. Drank 3-4 dilluted ensures. granola, 6inch sub, pizza rice for dinner.
weight 138# earlier in day up do 141 by end of day
ran 5 miles, legs feeling less dead, but overall body feeling very slow with no zip.
===========================================================
Thursday 4/10/14
Felt better. Ran 5 miles. Tummy still tender. Was up on my feet quite a bit, did dishes and cleaned kitchen with Mom. Ate quite a bit for supper (pizza rice). Had severe diarea at 3AM and throughout morning.
=================
Friday 4/11/14
Just felt really tired. Direa under control after 2 imodium AD's. Went to Shipshewana with family and Mom, just felt really tired. Calves are really sore (from new shoes?). Did not feel like running. Took 1 hour nap in afternoon and enjoyed the sunshine 67 degrees outside.
=========
Saturday/Sunday 4/12 and 4/13
Continueing to gain strength. Tummy kind of tender. Gaining weight is coming slowly. Drinking Ensures to help pack on the calories between meals in an easy way in addition to most meals. Ran 5 miles on Sunday-picked up the speed for a .5 miles of the run, felt OK, but normal. Calves are not too sore anymore, I stretched them good on Saturday and Sunday.
==================
Wed. 4/23/14. Follow up appointment with Dr. Abad, 3:30PM
My summary of how I'm Doing:
I've been doing well since discharged on 4/8. Eased into full diet over the next week. Drank Ensures between meals to bulk up from lost weight from the attack. I think I'm pretty close back to my old weight. Stomach (Pancreas) felt tender over that first week out of hospitable and sometimes feels tender even now. The biggest thing I'm noticing is just being a lot more tired, even now I'm not quite back to 100% energy wise. On days off/weekends I'm taking regular naps which is really uncommon for me. Workdays, I'm trying to get to bed earlier to not feel as tired during the day. I'm back running about 5 miles a day (35 miles/week), but much slower than before but gradually getting back into form.
Questions:
1. What did the full report of the pancreas biopsy show?
2. What comparisons can you make with my past medical record pancreas or kidney imaging to inform your opinion now?
3. Can speak more about my higher risk for pancreatic cancer and what I will need to do monitor or check for this on an ongoing basis?
4. Is there any point in me getting gene tested or my kids?
Yes for Jason, at this point not the kids. Talk with genetic counselor.
How will you know if the kidney lesions are cancerous or otherwise detrimental?
CA-19-9 was elevated in blood at the time of hospitalization, which is a general marker of cancer
pancreatic cancer among those with familial pancreatitis: 40% by age of 70
Abad will talk with Hochstetler regarding kidney biopsy
They will try to get medical records from University of Iowa prior to 2003, the latest records they have from U of Iowa. Goshen IU Health did not get any records from UofI prior to 2003. They can get anything we can get for records, so we don't need to pursue records further.
1% of cases of pancreatitis is familial. Find out what genetic mutation Grandma Potsander was diagnosed with. Some differences between different mutations in the way they present. Autosomal dominant trait. Genetic mutation would not change between generations. Get geneticist involved. They will refer. Drop off records of anything we find that may be helpful. Masses on both sides of the kidneys, not cysts. I'm not sure if this is good news. Cysts would be more common place and many people have cysts on kidneys and throughout their bodies and don't even know it. The fact that the radiologist is confident they are not cysts on my kidney is concerning to me. Tumors can grow that are not cancerous and can take over space, compromising the functioning of the kidneys.
My Synopsis of visit: Basically, this appoint revealed a little new information
(lessions on kidneys appear not to be cysts) according the reading of original CT scan done on 4/3/14.
genetic testing and or knowing my specific gene mutation may be helpful in predicting my life outcome
For now, the plan forward will be determined by results from Kidney biopsy (whenever that will be scheduled.)
Otherwise, the visit was unremarkable.
========
Later at home after my appointment.
Actually looked at my medical binder Dr.'s notes from 1994-2001 approximately. Noted a letter from Johlin stating, " The genetic testing on his grandmother returned. Genetic testing demonstrated that she also is positive for the familial pancreatitis gene. Additional research has allowed us to define the R117 gene into separate alleles. She has the R-122 mutation."
note from Nush
R117 is the big gene, R122 is the specific pairing of the allele for pancreatis
It seems U of I only faxed my records post 2003, which means the bulk of my medical history was not transmitted or could even be destroyed by now, but I think the medical notes I have in my binder will be very sufficient as I'm seeing notes like the one above and measurements and notes related to the kidney and pancreas. We will see to it that all my Dr's get copies of my complete binder (I'm really glad I maintained this binder and have. You can't count on anyone to maintain records or otherwise help you in this world.)
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4/24/14 -- apointment with Dr. Hoshstetler, Urologist, 3:10PM
Between leaving school at 3pm and picking up Heather and a train stalled on the tracks for 20 minutes we arrived at Dr. Hoschstetler's parking lot at 3:30 to find him walking out and asking if we were his 3:10 appt. and if we could reschedule. He was about to leave for a meeting in Elkhart and led into the office were we rescheduled for tomarrow at 4pm. Dr. Hostetler will be calling me to confirm the apointment, but it will likely be around 4pm Friday. From what I could tell Hostetler looked to be a quality guy and I could tell he wants to give my appt. the justice of time it deserves.
While we were there I had my personal medical files in hand from 1993-2001 and had his office make a copy of them. We then also went back to Dr. Ahbad's office and had them make copies as well. So at least now everyone except Nush (family dr.) has my full medical records.
===========
My questions for Dr.
Hostetler, 4pm, 4/25/14
1. What is on my kidneys? Are the words lesion and tumor somewhat
interchangeable?
2. What can you tell about the lesions on
the kidney based on the April 3 CT? How
confident are you of these opinions/findings at this point? Dr. Abad mentioned that he thought the
lesions were not cysts. Is this
potentially more serious then? Can you
tell if it is a “solid kidney tumor” see notes below. “Solid tumor” is potentially more bad,
right?? If it is not a solid tumor and
not a cyst, what else would you call it?
3. Abad said my CA-19-9
was elevated in blood at the time of hospitalization, which is a general marker
of cancer. Is this of concern?
4. What are the odds of kidney
cancer?
5. In the case of my kidneys does it matter
that they’ve defined the R117 gene into separate
alleles and I have the mutation of the gene R122
6. When will the biopsy be and do I really
need it based on my notes below?
7. How will the biopsy be done? How will you guard against making false
negatives? See below?
8. Were (Goshen Hospital) will biopsy be
done? Is the type of thing that I would
return to work or whatever is in my day?
How soon would the biopsy results come back?
9. Will the medical notes I provided help
make comparisons to my past kidney function/appearance compared to the present?
10. What are your thoughts on if I have Von
Hippel Lindau syndrome?
============================================================================
Take Home Message
from Dr. Hochstetler:
We must get biopsy to
know what we are dealing with. Biopsy
would be done in Goshen Hospitable on the 4.3cm mass, which is the biggest of
the multiple masses. The masses do not look like cysts (a cyst would actually be a good thing). The masses could be benign ancocytoma cells or renal cell cancer cells and it is hard to tell
the difference from a CT scan, that is why a biopsy is needed. ancocytoma cells would be a good thing here.
Bottom line whatever the outcome I have many options and it is treatable. If masses are benign then we would continue to monitor the size and growth of masses. Typically they grow at 1cm a year or less. If they are malignant then surgery would be needed (Cleveland Clinic, OH where they do 1-2 nephrectomies a week) to remove masses. Surgery could be scheduled for the summer. Surgery does not need to be immediate and a time from of several months would not make a difference in outcomes. Surgery could be scheduled for the summer. My kidney function after surgery should be very good. Certainly, other persons have had bigger masses removed with good kidney function outcomes. The masses are like separate units growing in and around the kidneys. They are just pushing the kidney over, but not effecting kidney function. When masses reach 4.5 cm and above sometimes “bleed out” occurs where by the masses gets to big for it’s “britches” so-to-speak and the wall of mass bursts (hemorrhages) causing internal bleeding (pain in back). Would need to surgery to remove masses when they approach sizes bigger than 4.5 cm regardless of benign or malignant status.
Looks like something genetic, don’t know the connection to pancreatitis, not Von Hippel. Creatine supplements Jason took in college can affect function of kidney but not create masses. Nothing short of some kind of prolonged environmental exposure to some nasty things could cause masses like this… the way the there are multiple masses leads Dr. H. to think the cause is genetic or part of a syndrome.
Bottom line whatever the outcome I have many options and it is treatable. If masses are benign then we would continue to monitor the size and growth of masses. Typically they grow at 1cm a year or less. If they are malignant then surgery would be needed (Cleveland Clinic, OH where they do 1-2 nephrectomies a week) to remove masses. Surgery could be scheduled for the summer. Surgery does not need to be immediate and a time from of several months would not make a difference in outcomes. Surgery could be scheduled for the summer. My kidney function after surgery should be very good. Certainly, other persons have had bigger masses removed with good kidney function outcomes. The masses are like separate units growing in and around the kidneys. They are just pushing the kidney over, but not effecting kidney function. When masses reach 4.5 cm and above sometimes “bleed out” occurs where by the masses gets to big for it’s “britches” so-to-speak and the wall of mass bursts (hemorrhages) causing internal bleeding (pain in back). Would need to surgery to remove masses when they approach sizes bigger than 4.5 cm regardless of benign or malignant status.
Looks like something genetic, don’t know the connection to pancreatitis, not Von Hippel. Creatine supplements Jason took in college can affect function of kidney but not create masses. Nothing short of some kind of prolonged environmental exposure to some nasty things could cause masses like this… the way the there are multiple masses leads Dr. H. to think the cause is genetic or part of a syndrome.
============================================================================
Jason is young to
have masses in kidneys. No known
association between pancreatitis and kidneys. Cysts of pancreas and liver
associated with Von Hippel Lindau- Dr. H. does not think I have Von Hippel
Lindua.
4 different types of kidney cysts, from Type
1 (water filled, zero cancer) to Type 4.
What you have is more solid on the kidneys. Hematobas, benign tumors. Multiple on both kidneys, want to conserve
kidney function and have an idea what we’re dealing with. If surgery is needed he would, refer out to
partial nephrectomy (Cleveland or Cinncinati) and they would also do more
extenstive tests on pancrease head to determine and document the overall state
of all my organs.
Odds of kidney cancer
most are cancer unless proven otherwise. Thinks of it as part of a syndrome,
not a type of renal cell cancer. Von
Hippel is hereditary, family disease.
There is a gene to look at, not sure if R122. Masses. It is a solid tumor.
Masses can “bleed
out”… grow until masses get big and get so thin-walled that there is hemorrhage
from the mass bursting. Usually sudden onset of back pain. Things have to reach 4.5 cm, Jason’s largest
measures close at 4.3 cm. Not a cyst. A
solid mass requires further assessment…. Biopsy
Need tissue to look
at. Need a biopsy, numbing medicine on
back, take it easy 24-48 hours after biopsy. Low risk. Go in on Friday, take it easy on Sat. Ben in
Goshen . If we found we needed to do
surgery, send to Cleveland Clinic. People have had more masses and bigger
masses than these and have not noticed diminished kidney function. Results min.
48 hours. Your kidney function is not
abnormal,.
Contact Providence to
see if a CT scan was done. Von Hippel is
a possibility but he does not think I have it, end up with cycst on the liver
and cycsts within the kidneys themselves and look more like clusters of grapes.
Looks like a syndrome
of some kind, not related to pancreatitis, causing the formation of the masses. Biopsies risks of. Aquacytoma and renal cell cancer hard to tell
the difference. Negative results still
need to figure out where to go.
Star-shaped scar ancocytoma, star-shaped related. Masses are relatively small. Kidney cancer usually found as part of other
scan. Blood in urine with palpable mass.
Confined to within the kidney. Multiple
areas on both sides, want to preserve kidney function.
20% of blood goes to
each kidney. CA19-9 blood marker of
cancer? Don’t know of marker to indicate kidney cancer. Anything now is all speculation. Not likely ancocytoma. Renal cell cancer, Cleveland clinic.
Oncologists good friend from Iowa. Ben
Marino biopsy of kidney in Goshen Hospital. Monday Dr. H will talk to him and
give me a call. , renal mass grows 1 cm
per year.
GI doc in Cleveland
Clinic over summer if needed. Transplants
last option, need immunotherapy. Preserve function of own kidneys first. He
will call on Monday. Looks like something genetic, don’t know the connection to
pancreatitis, not Von Hippel. Creatine supplements Jason took in college can
affect function of kidney but not create masses. Nothing short of some kind of prolonged
environmental exposure to some nasty things could cause masses like this… the
way the there are multiple masses leads Dr. H. to think the cause is
genetic or part of a syndrome.
Does anyone in my
family have issues with kidneys? What
does Dad have with his issues of self-catheterization???
http://www.urologyhealth.org/urology/index.cfm?article=24
------4/30/14
Heather called Dr. Hochstetler's office to reschedule kidney Biopsy.
to Fri, May 16th at 8:30, be there closer to 8:15. That works so much better. That is fine with Dr. Hochstetler. He wanted a certain doc he knows to do it and that is when the guy was available.
Procedure itself is not that long, but the hospital says to allow
for 6 1/2 hours from time of arrival until the time you leave. You will
be under anesthesia and completely out. I asked if the long time takes
into account the time for you to come out of anesthesia and she said
"yes", NPO for 6 hours prior (after 1:30 AM),
need a driver to take you home, and they will pre-vert with insurance.
They (meaning radiology) will call the day before if you have any
questions about the procedure.
Nurse named Angie is making the arrangements.295-1131.
-------
4/30/14, Dr. Nush, Family Dr., 3:30pm,
Take home message
I had "decently" high CA19-9 cancer markers in my blood while in the hospital, I had 147 and normal is less than 34 units per ml, BUT that does not necessarily mean ANYTHING. Blood markers are never used to diagnose cancer, and there are many times in which CA19-9 marker can be elevated, but the person in fact has no cancer. My elevated CA19-9 could be due to the general state of my pancrease and condition at the time of hospitalization.
At home I clarified with my self on the Internet that CA19-9 cancer markers are just for pancreatic cancer, which I was deemed not to have from the biopsy already done. To quote the Internet: "CA 19-9 may sometimes be ordered when a doctor suspects hepatobiliary cancer and/or bile duct obstruction. Non-cancerous causes of bile duct obstruction can cause very high CA 19-9 levels, which fall when the blockage is cleared. In these cases, it is a good idea to wait at least a week or two after the blockage is removed to re-check CA 19-9 levels." I was a bit worried that the CA19-9 cancer markers were bad omens for my kidneys, but I don't think that is the case.
Dr. Nush also clarified a bit about my understanding of genes:
R117 is the big gene or section of DNA, The R122 is the specific pairing of the alleles that control for pancreatitis. The allele pairs would be the cross member (horizontal) structures in the double helix design of DNA.
____________
Questions for Sometime:
Genetics: As mentioned earlier, a number of inherited cancer syndromes increase the risk of pancreatic cancer. These include inherited mutations in the BRCA2, FAMMM, PalB2 or Peutz-Jeghers genes. To learn more about familial pancreatic cancer visit the web site of the National Familial Pancreas Tumor Registry.
Do I have any of these mutations?
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