Leaves on this Family Tree

Friday, January 22, 2016

Gall Stones to Duodenal Cancer Diagnosis to Surgery

Gene hasn't wanted me to tell anyone what he is looking forward to. So I have the need to get my feelings off my chest and, perhaps, my nerves will calm down.

This is going to be my stress reliever . . . I hope


Wednesday, Aug 5, 2015 - Gene has an appointment with Dr
Dr Richard Carlson jr
Carlson at 9:00 for 3 month physical. They talk about the abdominal pains Gene has been having. We all figure (I went in withhim so he told the dr about his pains) it could be an ulcer from the nerves of moving, lactose intolerance or gluten. He is advised to cut out milk and see what happens. If it keeps up, call him.

Wednesday, October 28, 2015 - 1:30 appt at Kenmore Mercy . . . 8 hour fast. 
     Earlier in the week Gene and I had gone into the dr's office to get him an appointment because his abdomen was REALLY hurting. When asked when it last hurt Gene's answer was "about an hour ago." He got in that afternoon and they not only saw him but scheduled an appointment for an MRCP. 

Between now and Dec 17 Gene has:

  1. A Gall Stone removed by Dr Fayyaz..
  2. An appointment with his primary dr for check up. Dr says he is anemic and needs to set up an appointment with Dr Piscatelli.
    Dr Piscatelli
  3. Dr Picatelli tells him the symptoms he is explaining are classic for "Sump Syndrome" which happens to a very small percentage of people who have gal stones removed. However, he doesn't know why he is anemic. He schedules a colonospopy and an Upper GI to take  look.
  4. After another MRCP they think Gene has another mall gall stone. So he gets scheduled to see Dr Fayyaz again for this.

Thursday, 17 December 2015 - Appointment with Dr Piscatelli (GI doctor) about results of Colonoscopy, upper GI and biopsy of Duodenal Ulcer. 

  1. Good News: Colon is polyp free. Better than last time.
  2. Bad News: Biopsy shows the ulcer biopsy shows cancer.

Friday, 18 Dec 2015 -
Dr Fayyaz
  1. Phone call from Roswell Park Cancer Institute scheduling CATSCAN for Dec 28. Then will schedule doctors appointment when this is done.
  2. Went in for removal of another gall stone that showed up on last Monday's MRCP . . . no gall stone, just, according to Dr Fayyaz, "a lot of vegetation" that he had to remove from the "sump syndrome" that developed after the removal of the gall stone. We got to Sister's Hospital at 2 pm and were on our way home at 9 pm.

Monday, 21 Dec 2015 - 
  1. Call from Roswell Park telling the husband that his doctor will
    Roswell Park Cancer Institute
    Tall building is the actual hospital.
    Smaller front building includes registration,
     the different doctors offices, gift shop,
    outpatient services, pre-op an a pretty good
    cafeteria open to the public,
    be Dr Kukar and he has read his paperwork that Doctor Picatelli sent. He has moved the CTSCAN up to Dec 22. 3:15. Appointment with him is scheduled for Wednesday, Dec 23.
  2. Gene went to Quest to get a urine test. He has been urinating 2 to 4 times an hour since he got home from the hospital last Friday night.

Tuesday, 22 Dec 2015 - 
  1. Gene has been sleeping off and on this morning. That's good. (He has slept on the sofa since Thursday night so he can be close to the bathroom.) When he is awake he has pains and I can tell he is anxious/nervous about what is ahead of him. But, when he sleeps, he relaxes.
  2. CT Scan went well . . and quickly. When the man who did the scan came out to talk to Gene, I wondered what was going on. He said, "Did you know you have a small kidney stone. I saw that the bladder was "backed up" so I looked further and the stone had passed from the kidney and is now on it's way out. Make sure you drink LOTS of water to help flush it out.
  3. Oh great . . . something else to add on the list of why Gene is having pain in his abdomen.

Wednesday, 23 Dec 2015
     We left home at 11:30 am for a 1:15 appointment at Roswell Park Cancer Institute in downtown Buffalo. Yesterday when we went for the 2:45 CTSCAN the traffic was horrible. So I told Gene I thought we should leave early since we would be traveling during noontime traffic. Fool us, we left at 11:35 and were there before 12 noon.

    More paper work. Then we were taken back into an examination room. More paperwork, this time the questions were asked and were answered in the computer.

     Next, Maureen Brady (a Physicians Assistant) came in and went over everything we would want to know. She explained all possible scenarios and then checked Genes abdomen and back . . . he hasn't passed the kidney stone and the back pain is on the left side, right where the stone is. The right side was tender. (Gene said it might be because he is so conscious about any pain he is having.)

Dr Kukar
     Finally, Dr Kukar came in. Young guy with 11 years experience. Again he asked some questions. It is weird, Everyone here has asked when Gene became jaundiced. He has never been jaundiced during this. I guess it must be something that most patient come in with as a side effect.

     Next he drew a sketch showing how the duodenum is divided into 4 parts. #1 is where the stomach empties into the small intestine and #4 is where the duodenum becomes the small intestine.

     The records they got said the cancerous ulcer was small and in section 1. (The CTSCAN from yesterday didn't show the cancerous area nor did it show any cancerous areas in the abdominal area . . WHEW!)

     Doctor want Gene to have another endoscopy done at Roswell so he can see exactly where this problem is and see, with his eyes, exactly what it looks like.
  1. Option 1: If it is only in this area and is as small as the info he received says what they will do i cut out this section of the Duodenum and part of the stomach and then reattach Section #3 of the Dudenum to the stomach.
  2. Option #2: If it is in Sections #2-3 they will need to do what is called a Whipple Procedure. It is more complicated and can cause more problems. With it part of the Pancreas and Gall Bladder have to be removed with the cancerous Duodenum. 
     What it looks like right now is that Option #1 is what the doctor thinks Gene will be looking at. If it i, there is very little chance of needing radiation or chemotherapy (WHEW again.) However, he did give us the percentages of what can go wrong and that with Gene's COPD and muscle mass in his abdomen, it will make any surgery rougher.

     Gene was kind of worried (wouldn't anyone be walking around with cancer growing inside of them?) but we talked about how the doctor has to let you know the negatives as well as the positives.

     At the end of our day, we did a WalMart stop, I mentioned I'd like steak for supper. We decided to top at Submasters for their Philly Cheese Steak Sub . . . it is SO GOOD. When we looked at their menu they had a steak, fries and salad combo. We went with that. The steak tasted so good to  me, Gene said once he took his teeth out it tasted o much better. We both think the teeth probably still have some residue from that barium "Berry Smoothie" he had to drink yesterday before his CTSCAN.

     Now (6:03 pm) he is sitting on the sofa, head back and sleeping. Not only is he sleeping but he is snoring which he hasn't done since before he started dealing with the gall bladder problem. Hope that steak helps his body relax and feel like it has been nourished.

Thursday, 24 December 2015 - 

  1. WOWZA! Gene's spirits are so good today. His sense of humor is back AND he got the ham out if the fridge in the basement and cooked it for tomorrow. He hasn't felt like cooking since this whole thing started.
  2. Also, he keeps talking about the CTSCAN. It was supposed to pick up the cancerous growth and it didn't, but it did pick up the kidney stone. Makes him wonder just how small the cancerous ulcer is?

Saturday, 26 December 2015 - we went to Gene's family Christmas get together. I told him he needed to tell his family because I knew how pissed I was when I found out my sister in law had Esophageal Cancer. He told them (sister and brother weren't in the room so I hope someone fills them in). He sure made it sound better than I feel inside. But it worked for him so that's fine.

Monday, 28 December 2015
Dr Bain
  1.  10:45 appointment at Roswell ark Cancer Institute in downtown Buffalo (basically we drive down Delaware, two streets to the East of our house) and turn when we get to North Street and we are there) for another Endoscope of the Upper GI.
  2. Dr Kukar wants to see the ulcer/cancer for himself so he knows where it is. Wonder what we will find out today?
  3. Dr Bain, who did the Upper GI came out and talked to us. They printed out pictures of what the area they were looking at looks like AND took another ample to biopsy.

Wednesday, 30 Dec 2015
  1. Gene called Dr Lillie, Urologist, about the pain in the kidney area and the fact he is urinating without any warning.
  2. Call back from office sets up appointment for 04 Jan 2015.

Thursday, 31 December 2015 - New Years Eve
  1. Call from Dr Kukar's office . . . Changed appointment from 15 Jan to 05 Jan.
  2. Call from Dr Ma's office, Dr Kukar wants Gene to talk to him. He is an oncologist who specializes in Colon, Liver, Pancreatic and Rectal Cancers. Maybe I shouldn't have Googled him . . . we were told that part of the Pancreas would have to come out if the Whipple Procedure is done. Now wondering what the biopsy taken  28 Dec shows. 
  3. Getting nervous now that things are moving.

Monday, 04 January 2015 - Kidney Stone Check Up

  1. Saw Dr Lillie (Urologist) today.
    Dr Lillie
    He did receive the info from Roswell from the CTCAN.
  2. Did an in office ultra sound and Gene's bladder isn't emptying fully when he urinates. Prescribes Flomax to see if he can get the bladder "regulated."
  3. Dr Lillie asked about Roswell progress . . . told him we go tomorrow for a consultation with Dr and with Anesthesiologist. Sounds like surgery is on the horizon for us.
  4. Dr Lillie says the Whipple Procedure is a difficult/rough operation.
  5. Fingers, arms, eyes, legs and anything else I can cross is crossed.
  6. I go from worried to being calm. I think Gene is handling this a lot better than I am.
  7. I am surprised that I can sleep as soundly as I can. Gene has been sleeping on the sofa the last week or so . . a lot closer to the bathroom for him that sleeping upstairs and having to make it to the bathroom on the main floor. Hoping he gets back upstairs soon. I want to be as close to him as possible while this phase of our life is happening.
  8. Tomorrow . . . Our journey begins for real.

Tuesday,   05 January 2016

  1. Visited Pre-op at Roswell.  I got to back in with him, they did an EKG, then a nurse came in and went over everything that would happen when he was dismissed. Next nurse had 10,000,000 questions . . well, not really. But now it is seeming like he is answering the same questions every time he goes. That, honestly, makes me feel good. I know this is their way of double checking what the patient is telling them.
  2. Next a Nurse/Anesthesiologist came in and did the "professional" questions for the anesthesiologist. 
  3. She then tells us she has to go "run the numbers" to see what the pro's and cons are of him being a possible candidate for the surgery.
    Dr Mark
  4. Dr Mark, the Anesthesiologist came in and said the numbers looked real good and he would be sending Dr Kukar an email saying he had approved Gene for the surgery.
  5. Next stop, "pre-op" blood work

Wednesday, 06 January 2016
     Had to go in today for an echocardiogram. Technician who did it said he looked pretty good to her. So, let's see.

Thursday, 07 January 2016
  1. About 2:30 Gene gets a call from a doctor in Pre-op. His enzyme level was high showing that his bladder was not emptying. So he needed then name of his Urologist so he could call him. 
  2. About 15 minutes later he calls back. Gene is to get to an ER and get a catheter inserted to empty the bladder. He would call the ER to let them know Gene was coming in and why.
  3. By 3:00 we were in the ER.
  4. By 4 I got to back with him. He had passed 2 liters of urine. They were amazed he hadn't been in severe pain.
  5. We finally got home around 7. They showed me how to empty the bags and how to change from the large ones to the small leg bag.
  6. Tomorrow morning we call Dr Lillie and see what's next.
  7. I just took his socks off, since how he is sitting makes it hard. His feet are SO swollen. I hope that by tomorrow morning they go down.

Friday, 08 January 2016
  1. Gene actually slept in bed last night. First night in a couple of weeks . . or at least it seems that long.
  2. I know he slept well. When I got up with Indy, he had eased himself onto his right side, which is his favorite side, but is also the side the catheter tube is placed on. I know he was worried about it. I kept telling him it will work, people have been sleeping with them for many years.
  3. Indy only wanted to lay on is right side once this morning, so that was good.
  4. Matthew walked over his legs and then up his right side over the tube twice. I know this will happen more, and Matthew will get better at where she walks.
Monday, 11 January 2016

  1. Happy Birthday to me :)
  2. Gene went in to see Dr Lillie. Dr wants him to keep the catheter in until Roswell Park  is done with their "whatever they are going to do" then, he said, either they can take it out or he will. He said that the more times it is removed and replaced the more your chances are to get a urinary infection.
  3. Nurse changed his bag from the large one to a leg bag. The ER nurse showed me how last Thursday but I wanted to make sure I knew how . . now I know.
  4. Lee called this afternoon to wish me Happy Birthday. When he said, "How's it going" he left me the perfect place to tell him what's been going on. Of course he was shocked. Told me to let him know what the dr's at Roswell finally decide.
  5. Then, Diane Strong (Yes, I know it's been Pyle for years, but she will always  be Strong to me) did almost the same thing in a Facebook message, so now she knows. Joyce is the only one left to tell.

Tuesday, 12 January 2016 (I copied this from an Joyce's email . . . I forgot some things and added it there . . didn't realize it would come out all white? Oh well.)
  1. Gene slept well . . we changed the leg bag to the large bag for overnight . . when he woke up this morning he was amazed, Indy was sleeping on his right side between him and the edge of the bed (which is one of her favorite places) right on top of the catheter tubing to the bag. He was amazed that it kept draining with her 75 pounds on it. I figure he just pushed it into the mattress and didn't flatten it.
  2. 12:45 pm appointment with Dr Ma in the Chemo/Radiation dept. He saked Gene some questions and wasn't really sure why Gene was there. He said he usually sees patient after their surgery.
    Dr Ma
  3. After Gene explained why he was there, Dr Ma went through the three possible choices: a) surgery, with possible chemo at the end and it's gone and cured; b) chemo only and you get a prolonged life but could have many complications from it and c). do chemo 1st and then surgery but they seldom do t in this order.
  4. If the surgery/chemo route is taken, we are looking at 6-8 weeks recovery from surgery and then 6 months of chemo every 2 weeks . . . looks like a summer or fall move now
  5. Then he tells us that Dr Kukar had written in the patient notes no surgery . . GOOD GOD! I sure hope that is because of the blood work from last week and that now, with the catheter draining the kidneys and the starting of new meds to help shrink the prostate, he will be able to have it.
  6. Dr Kukar seems to be the only one questioning how healthy Gene is. Anesthesiologist in pre-op and Dr Ma in Chemo/Radiation for GI Cancer think he i a good candidate. That he is in good shape. But, then again, Dr Kukar is the one who will be doing the surgery and he knows what he wants his patients to be like.
  7. Hadn't hear from Dr Kukar's office about the next appointment so Dr Ma said he would get the message to his office that he needs to schedule the next one BUT he also told us to go down there and make one just in case his message doesn't get there.
  8. Next appointment with Dr Kukar is 22 Jan 2015.
  9. Got an email from Joyce this evening wishing me a Happy Birthday . . laughing at herself because she reminded people that it was yesterday and she forgot. But that i comipletely within reason . . her sister in law died and her son is the administrator since there were no children. So he will  have his hands full. 
  10. Now, going to copy this, add it to the email I'm sending Joyce so she knows what's up.

Wednesday, 20 January 2016

  1. Gene got  call about 11:00 am from one of the GI nurses. They wanted him to come in for a meeting with one of the Doctors in the Thoracic Center. While there they would give him a full set of breathing tests plus meet with a doctor.
  2. Then he was to go to Phlebotomy for more blood work.
  3. Finally they wanted him to stop by the GI Center so they could get him started on a Spirometer before his surgery on Monday . . . SURGERY ON MONDAY! First we had heard of that.
  4. We said we would be in between 12 and 1, since we needed some time to get ready.
  5. Well, they called back, we needed to be there by 11:45. They had worked us into an opening with the thoracic doctor.
  6. We left the house at 11:08 am and were at the valet service at Roswell by 11:35 . . . would have been there sooner but we hit a bunch of red lights.
  7. Dr Abdul Hamid Alraiyes was the doctor we saw at the
    Dr Alraiyes
    Thoracic Medicine Center. He was a really nice guy . . great "bedside" manners. He explained the reason they were so worried about the lungs is that his aren't the best, but, then again they aren't the worst. Since the surgery will be so close to the diaphragm they want to make sure the lungs are as strong as possible before he goes in. He also ordered a script for Symbicort. He said this has a steroid in it and it will help hi, better than the inhaler he is using now. But, he can use his inhaler if needed in an emergency during the day.
  8. Blood work, no problem. But, he did end up with a bruise which he seldom gets.
  9. Next, we went to the GI Center for a meeting with a nurse on how to use the Spirometer. Gene has used them before, but it was nice going over it again. This is where we found out that, yes, surgery is scheduled for Monday. We will get a call on Friday telling us what time it will be.
We ate lunch in their cafeteria. Pretty good stuff! Gene didn't say he was getting nervous but something in that vein. I said the same thing. I told him I think we had become blase since we hadn't heard anything. It wasn't out of sight, out of mind . . but kind of. 

Now, we know when D-Day is . . . sure brings it home to both of us. So, I guess we better get our acts together so we will be ready for Monday.

Friday, 22 January 2016
Last visit with Maureen Brady and Dr Kukar. Maureen went over all of the pre-op stuff from the GI Center view. Dr Kukar, the rest of the surgical team, and the other GI surgeon met and discussed Gene's prognosis and what they need to finally do for him. They all agreed on surgery. You have NO IDEA how relieved we were to hear the final outcome of the input from Pre-op, Oncology, Thoracic Dr and Surgeons from the GI center. They all agreed that he was in good enough shape to be able to withstand the surgery. 

We both think Dr Kukar was very pleased with what he had received from his breathing labs in the Thoracic Center and the info he had gotten from Dr Lillie. When I asked some questions about how everything would be reconnected and how the bile and pancreatic juices would reach the food. He gave me a quick grin. I told him I had taught Life Science in Middle School and it had me intrigued since I know how close everything is,

The diagram he drew today made so much more sense than the one he drew on Day one with him. Then he said, "Wait a minute, I have something to show you. Not the same surgery but pretty close."

He left and came back in with his phone. He found what he was looking for and said, "This might be a little graphic."

Then he showed us a video of what he had removed from another patient. I could recognize the part of the small intestine and the head of the pancreas. He said that what he takes out of Gene will look pretty much like this, Then this will be sent to pathology to be checked out.

So now we know Gene has to be at Roswell by 7:30 am on Monday morning. The night before and the morning of he has to take a shower and use a special washing liquid to clean the area of the surgery. So, looks like a 4:00 am alarm so we will be u p an going by 5. Hope we can both get some sleep Sunday night. I told Gene he can get his extra sleep once they knock him out. I sure hope the surgery waiting room has comfortable places to sleep!

WHOOPS! Just got a call from Roswell . . . surgery is at 7:30. We have to be there at 6:00 am. Guess the 4 am alarm just go moved back to 3:00 :(

It's 7:06 pm. Gene and I have called all family members and friends we need to tell so, I guess it is time to get this posted so I can direct more people to it so they will understand why we haven't move home yet.


  1. Oh Paula..I had no idea. Will be thinking of you and Gene - especially Monday morning. Make sure you take something to stitch while he's in surgery. Busy mind will make the time go faster. Give him a hug for me.

  2. It does become a roller coaster once you are in their systems, it's the same over here in UK, they do move quick. Having done the op, chemo and radiotherapy back in 2010, I am sending my hope and hugs to you both. You are right I think it was harder for Hubby when I went through my treatment, I knew how I felt, but he was worried about every thing. Please keep me updated, either on here or by email. I will be thinking of you.


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