Latest Scan Results

I am near normal now 3 months after surgery. The monthly Cancer doctor visit was suspended in October because I had another Octreoscan. The Sandostatin shot that I receive every month at my Dr. visits would have interfered with the nuclear isotope that I get injected with for the scan. So we skipped October’s appointment. This month when I went in the news was almost all good. The results of the scan were very good. My blood work was very good. The tumor marker was at 88 when I first visited Dr. Roberts, now it is at 7. I don’t understand too much but from a “bad” high of 88 to a “good” low of 7, I can see the improvement. 7 is a normal level.

The one worrisome detail is that the scan showed a tiny abnormality at the base of my brain. I will have a CAT Scan to check on it. They wanted to do an MRI. I said I wouldn’t be able to do that unless I was unconscious. That wasn’t an option, so the compromise is a CAT Scan, if that finds something then I will have to have an MRI. I think I fear the MRI more than a brain tumor.

I also visited the radiologist to get the results of my CAT Scan on my liver. The tumors in my liver are shrinking. That means No new Chemoembolization. The first two were sufficient. Dr. Palestrant was very positive in contrast to Dr. Roberts who is very reserved. Although at the last visit we saw Dr. Robert’s nurse practitioner instead of him. She said he was very jubilant about my scan results.

The next things happening are a CAT Scan of my brain, let’s hope for NO tumor, they say it is a remote possibility. I also have to have an open MRI, (emphasis on the open) of my abdomen as a follow up on the intestine tumor that was yanked out, hopefully there will be no traces of that.

All in all things are very positive and I am feeling good. Thank you to everyone who cares, has prayed for me and shown concern and love.

After surgery

It’s been awhile since I have posted anything. I haven’t felt like posting after my surgery. I am getting better. The nightmare of the hospital is receding. I am getting stronger and less woozy. I am amazed at how long this recovery is taking. I was supposed to be in the hospital 7 days, my goal was to get out in 5 or 6 days and do better than the average. I ended up being in for 10 days. I thought I would go back to work pretty fast, couple of weeks, it’s been a month and I don’t know how I will do yet. All the doctors tell me it’s normal, that the recovery takes time.

I have what looks like a red zipper on my belly now. It starts below my belly button and goes up to the belly button then curves out in a half moon circle around the belly button and then continues up to just below my chest.

There are always more things to wait for, but the main thing is that the primary Carcinoid tumor is gone. They say there are probably microscopic pieces left in the lymph nodes. Which means another tumor may start some where else. The good news is that Carcinoid tumors are slow growing so I may have years before having to worry about another surgery.

Next things upcoming are another Octreoscan, CAT scan, possibly another Chemoembolization. The results of a sleep study for sleep apnea and the results of a battery of tests done at the last Dr visit. Then of course regular blood tests.

I am hoping for another medical vacation, where I can pretend things are normal for awhile. A place where there is NO hospital green Jello.

Monday, 25th

John is coming home!!!
Keri

Saturday, August 23rd

John is staying a little longer in the hospital because his blood pressure and heart rate need to be monitored. They gave him a CAT scan of the heart this afternoon to rule out a blood clot. Results of CAT scan - everything looks good in the heart and lungs.
Hopefully John will come home Monday.
Keri

New Room

This afternoon John was moved to a new room.
Telemetry first floor, room #137, bed 2, pod D
602-239-4992 direct line to his room.
He was given some juice, clear soup, jello & italian ice for the first time since he had surgery.
He was also able to have a shower!
Hopefully Saturday he will come home.
Master Block sent a beautiful fruit bouquet to John, yummy, yummy!!!! Thank you! Thank you for everyone sending cards & well wishes!
Keri

2nd Update

John is still in the intensive care unit. The doctors are concerned about his severe sleep apnea. As far as the surgery, the doctors say John is doing great. Everything is progressing nicely. Because of the anesthesia, his intestines are still asleep. When they wake up they will let him have liquids. He hasn’t had anything to eat or drink since last Thursday night. He is feeling lousy and can’t wait to come home. Hopefully Wednesday they will move him to another room, which means one more step to coming home.
John will have another CAT Scan in October to check on the liver. In November (or sooner) he will have another Octreoscan. The doctors will continue to monitor him closely.
I would like to thank everyone for love shown & prayers offered in John's behalf.
Keri

Surgery Update

Hi Everyone, This is Lindsey Tieman. I just got off the phone with Keri and she asked me to post an update for John.
Before surgery Dr. Perry checked in on John. After he explained everything he was going to do he asked, "John, why are you wearing a blue bonnet?" John said, "I don't know." Dr. Perry said, "Because every things better with Blue Bonnet on it!"
Johns surgery went really well thank goodness! It was about 2 hours long. He was in recovery for about 2 hours and then moved to ICU. The Dr's had to remove about 2 feet of intestine, which really isn't bad. He still has enough to be just fine. They removed a small ball size tumor and some lymph nodes. He will be in the hospital between 5-7 days. Saturday and Sunday will be very important rest time & getting John up and moving around, so the family is asking that John have no visitors until Monday. If you would like to visit, please make sure to contact Keri first to see how he is doing. He is at Good Sam and as soon as he is in a regular room, one of us will make another post with that info.
I would like to thank everyone for all of your love, support and prayers for John. He is such an amazing person (and Cody's favorite person ever) that I know he will be able to overcome this. Thank you again.
.

Pre Surgery

Well it's been a while since I've written, I've been on vacation, not the kind of vacation where you go somewhere but the kind of vacation where you don't worry about surgeries or cancer. The kind of vacation where you don't want to face reality and write a blog. It's been nice for a month to almost feel normal. Now back to reality. Yesterday I did all the necessary pre-op procedures for surgery on Friday. I got an EKG, got blood work done, saw my regular doctor and went and visited with the surgeon. From the surgeon we found out that I can expect to be in the hospital for about a week. I will expect to be doing good if I get out of the hospital earlier than seven days.

The surgeon expects the tumor to be in my small intestines. It may be real simple where it's right there visible like a golf ball and all he has to do is yank it out, or worst-case scenario it might be like sandpaper and scattered all through my fatty tissue. We won't know until he opens me up and looks. After talking to him, Keri and I feel pretty good about the surgery. The surgery is Friday, August 15 at 10:30 a.m. We have to be at the hospital at 8:30. There's not much else to tell until after the surgery. It might take a little while to update the blog after the surgery especially if I'm in the hospital for seven days. I'm looking forward to the hospital food, man oh man! That and the needles.

Chemoembolization #2

Yesterday I went in for my second my Chemoembolization. I could just say ditto from last time. With the following differences. I didn't do real well with the IVs this time. After the first smaller one in my hand it felt like it had gone in so far that it was poking through the backside of the vein. The nurse said that it was hurting because it wasn't in far enough, that the needle was short and she had shoved it all the way in to the valve and it wouldn't go in any further. Of course I am real wimpy about needles and blood anyway so this kind of talk and thoughts and pain made me start to feel a little light-headed and faint. The fact that I knew all this was coming and was worrying about it ahead of time didn't help. The nurse gave me cool cloths for my forehead and the back of my neck. Then we did the big IV. The difference between a small IV and the big IV is that when she shoves them in she says "little poke" and "big poke". That and the difference between "little pain" and "big pain". After the big IV was all taped down and she had flushed saline through it so that I could taste it or smell it in the back of my mouth. She asked if I still had pain in the little one. I told her that I chose to believe that it was just the tape pulling my hair and not really the needle. She chose to believe that she was going to re-do it. So ripping the hair and the tape off, pulling the needle out and putting a bandage on she told me that she wasn't going to mess around and was going to go "mainline". So she went to the big fat juicy vein at the crook of my elbow. This was better because it did stop hurting after a little while.
The next difference is that it is not called a catheter it's called a Foley, change the name all you want it's still the same painful humiliating experience.
The operating room was the same, cold enough to get me shivering. I noticed the same ceiling tiles as before, I didn't mention them last time. There are two squares just above the operating table that have imprints of leaves on them. All the rest in the room were normal tiles. This seems a deliberate attempt to distract the patient. On a scale of distraction from 1 to 10, I would say that these tiles have an effective rate of .001. There was still the shaving and lots of activity. Dr. Palestrant introduced Dr. Burke who was going to observe and stand in with him today. He asked if that was all right, after telling me that he was going to still do all the work, I said okay. I did not get as many meds this time and was much more conscious through the whole operation but not conscious enough to object. Really the only objectionable part is the "big poke" of entering the femoral artery. That happened before I knew it and was over before I could say "more meds please". I still got to take breaths, hold them, and then breathe.
The recovery was just about the same, laying very still for four hours. I got lunch this time instead of dinner. Which Keri fed to me. Turkey sandwich and fruit. Keri asked for a bowl of soup also to feed me. We were disappointed that there wasn't a menu that we got to choose from like last time. But the food was okay. Right before they let you go home you have to go for a little walk. Which I did last time. But this time the nurse wanted me to go to the bathroom. So on our little walk I did that. What is interesting is that after coming out of the bathroom. The nurse is standing right outside the door and she goes in and flushes the toilet a second time. This is standard procedure for chemo patients. I know the stuff is supposed to be very toxic. I didn't question them but I doubt there was any chemo coming out already because it hasn't started hurting yet. I am expecting that on Friday, if things go like last time.
The only other real difference was a surprise after we got home. Last time before we left the hospital they took off the big bandage that stretched clear across my waist. And then told me to take the pressure bandage off the next day in the shower. This was the one that was very sticky and stretched all the way across my waist also. This time they told us to take the big bandage off after we got home. Keri did that and to our surprise there was no second bandage underneath. Keri put a couple of Band-Aids on. My anxiety level went up and I sat very still the rest of the night and was afraid to go to bed because I didn't have the security of that pressure bandage. What a wimp. Everything is okay and I feel fine as of this writing. I am expecting the symptoms like last time to start 48 hours later. Pain, fever, overall flu type feeling and my favorite, confusion.

Aftereffects

Well I might have spoke too soon when I last said that there was no pain or anything. Sunday night I started to have pain. It increased to the point where I knew I wasn't just imagining it. We called the "On-Call" Doctor. He said that more than half the patients having this procedure will have pain, fever, sickness. He was surprised that Dr. Palestrant hadn't sent me home with a prescription. He called one in for me. I only used 1 and 1/2 of the pills so far. He said the pain was the tumors dying, so it was a good pain.
We went to my Dr appointment on Tuesday. Dr Roberts said I looked about like he thought I would after this procedure, I looked like I felt lousy. He said if we killed the right amount of liver/tumors I would start to feel better in a few days, if we killed too much then I would feel like this for months. He recommended a surgeon for the removal of the mass in my abdomen. We have a consultation visit set up for July 15. They took blood to test to give some indication of how well the first procedure went. I also got my second sandostanin shot.
I worked 1/2 a day on wed. we will see how I do today but I think I am feeling better. The pain that started high on the right side seemed to move down over the days. I imagined it starting at the top of the tumor and eating, dissolving shrivelling the tumor slowly from the top and moving down, sort of like consuming a carrot still in the ground following it right to the tip. I have no idea if that is accurate but that is what I have imagined as the pain has moved downward.
Now I just need to start working on my courage to go back and start over again next wed.

Chemoembolization Adventure #1

Friday, June 27 I had my first Chemoembolization at John C. Lincoln Deer Valley. The first thing that you do at the hospital is paperwork of course, that is after waiting for a while in the waiting room. So while getting signed up for this little adventure the woman doing the paperwork put my ID wristband on and told me that this was my pass for all the rides that were available, kind of like Disneyland. I asked if it even included the E ticket rides. She said absolutely.
Then I got to visit the vampires and they drew some blood to "run a rainbow" whatever that is, sounds very pleasant though. After a long wait I got assigned to my room, cubicle number four. Not really a room just a bed with curtains around it with neighbors on both sides. The neighbor on the right had her TV loud enough that I could watch mine on her channel and not need any volume. The neighbor on the left was having a pacemaker put in that day and I heard all of his history and his doctor's advice and the DVD they watched on pacemakers.
Meanwhile my adventure began with a costume change. I got to wear one of those gowns that when I walked down the hall to go to the bathroom I had to hold it in the back to make sure I wasn't Mooning the room. Then it was into the bed and hooked up to blood pressure and temperature, pulse and other kinds of machines. Then came the IVs, two. Both in the left-hand. I was told I was going to get a lot of drugs today. Antibiotics, anti-inflammatory, anti-fungal, anti -nausea, Benadryl, some kind of dye to help with the procedure and then some kind of sleep aid. Then my first E ticket ride was to receive a catheter, something you could describe as a wet your pants experience.
There was a shift change for the nurses and the new nurse came in and wanted to put a red allergic band on my wrist and I asked her, "what was I was allergic to" she said, "you don't know what you're allergic to" and I said, "I'm not allergic to anything that I know of" and she checked the chart and gave me a little thrill when she said, "I have the wrong chart". Actually throughout the day she proved to be a fairly good nurse. She started administering all the drugs that I needed to get taken before surgery. Then the surgical nurse came and got me. My next ride was in the bed rolled through the hallways. We stopped in the hall outside of the x-ray surgery room. This is where Dr. Palstrant came and talked to us. He reviewed everything with us reminding us of the risks, one of which was that I could die, but he put it into perspective by saying you could tell me that I've might die on my way home from work tonight in a car accident. Keri asked if she could watch the procedure and was politely told no. They showed her to a waiting room. She was well prepared with her little suitcase on wheels that she had wheeled around with her food, her sewing and other projects.
I was pushed into the surgery room.The surgery table was a couple feet higher than the bed that I was in, they asked if I wanted a step stool to get up on the table, I just stood up, lifted by rear end and laid down, they were duly impressed. Then they start making adjustments for my height and not quite fitting the table. At this point there was lots of activity and I started getting very nervous. I was getting shaved where they were to do the incision not to gently by some gentleman named John. There was machinery being moved around people walking around doing various things, the nurse working on my arm and IVs to administer the drugs. It was a little cold and being nervous I started shaking all over and shivering. Then they started to give me something, it was more Benadryl or the beginning of the Benadryl. After one session of that I was a little bit calmer but still breathing heavy through my mouth being nervous. She gave me a second dose. I was much calmer but still awake and conscious. I remember the nurse telling Dr. Palstrant that I had two doses. He told her to give me another one of something I don't think it was Benadryl this time but he wanted me conscious enough to be able to hold my breath when he told me to. I don't remember the incision or the insertion of the catheter into the artery, glad I missed it. I do remember several times having to take a little breath and hold it, pause, okay breathe. It didn't seem to take that long and I heard him say okay we are finished.
Then came the next E ticket ride, the not too gentle John took the catheter or the tube that had been used to deliver the chemo out of my femoral artery. This is where there's blood, pressure points, pain from those pressure points and a constant wiping or swabing of the area. Thankfully I was still a little dopey, but not nearly enough. They finally put bandages over it, as it turns out very very sticky bandages. Then they put what they call a pressure bandage which went all way across my hips from one leg to the other, when I was all ready to go to recovery I got to be pulled and slid down a board onto the bed and pushed down the hallways again for my next ride. Then I was back in good ole cubicle number four. I was instructed not to move my leg and lay flat and not lift my head so that I wouldn't bleed. I really didn't want to bleed so I did as I was told. I slept the first hour or so, at least dozed in and out. Keri sat with me. She fed me lunch, not too bad for hospital food. We waited around for four hours. Finally got unplugged, dressed and got to go home. I was instructed to continue to lay flat, not to sit for long periods, not lift anything heavier than 10 pounds and to take it easy for the next 48 hours.
Other than tearing the hair off as I removed the sticky bandages I have felt fine, very little side effects, no pain. There is a little paranoia about bleeding, but no incidents. So my day at the amusement hospital was a success. I know that I'm wimpy and squeamish about the little things like needles and bleeding but maybe that keeps me from worrying about the tumors in my liver and the chemo that is necessary. The best part is we get to do it all over again on July 9. They did the right side of my liver this time and will do the left side next time.

Chemoembolization

1st Chemoembolization; June 27th 1PM John C. Lincoln Hospital North / out patient
2nd Chemoembolization; July 9th 9AM John C. Lincoln Hospital North / out patient

The Radiologist

Keri and I went to meet the radiologist. We were both delighted with him. Keri because he asked the same question that she had asked at Dr. Roberts office, “Why aren’t we doing surgery on the primary tumor in the abdomen first?” Dr. Roberts answer was that he is very concerned about the liver and wants to attack it first. I read into his meaning that the tumors in my liver will kill me a lot faster than the one in my abdomen. Dr. Palestrant weighed the different things that Dr. Roberts may be thinking out loud to us.

I liked him because of his sense of humor. After I expressed my absolute terror of claustrophobia, he said, ”We will take very good care of you, when we do your procedure I will sing lullaby’s to you and of course you will be sedated.”

The plan is for me to receive two treatments of Chemoembolization. Once for the right half of the liver then a couple of weeks later the left half. They do half at a time in case something goes wrong and the liver fails, I guess you can live on half of a liver.

The procedure as they explained it to us is: they put a catheter in the femoral artery in the groin and run the line up through the network of blood vessels right to the liver and the tumor and inject chemo drugs right into the tumor, they also block off the blood vessels feeding the tumors and the little suckers die!

The first chemoembolization will happen Friday, June 27th.

The begining

For years I thought that I had an ulcer. Maybe I use to. I have had occasional bouts of intense pain in the abdomen sending me to the emergency room or urgent care.

2-19-08 After having moderate abdomen pain I go for checkup at Dr. Johns, my regular care physician. After a blood test he refers me to Dr. Mills, a gastroenterologist.

3-13-08 Appointment with Dr. Mills. He wants to do an ultra sound to look for gall stones which he suspects could be causing the pain. He sees in my records from Dr. Johns that I had an ultra sound done in 2004 that was clear.

3-14-08 Ultra Sound on abdomen. Spots on my liver. Dr. Mills wants to do CAT Scan. No gall stones at least.

3-20-08 Have CAT SCAN done at Metro Lab. Phoenix Diagnostic. I had to pick up a kit the day before the scan. I got three quart size bottles of white goo that looked exactly like Elmer’s glue. I got the choice of “Berry or Vanilla” flavored. I chose berry.

4-10-08 Biopsy at Good Sam for lesions on my liver found with CAT Scan.

4-14-08 Cancer Day. Dr. Mills calls with bad news about biopsy. The tumors in the liver are Carcinoid. I took some satisfaction in the fact that at least this is supposed to be a “Rare” cancer.

4-23-08 Appointment with Oncology Doctor Michael Roberts. Confirmed Carcinoid tumors in liver. They moved there from somewhere else. Where is the primary source of cancer? About 50% of the time (according to my reading) the primary is in the intestines. To find the primary and see the extent of all tumors I will have to have an Octreoscan. A $7000 test where they inject you with radiation that is attracted to the tumors.

May 12, 2008
Experienced my first Carcinoid syndrome symptom of Flushing. I started to get nauseous then real hot, broke out in sweat. Quite unpleasant but did not last too long, a few minutes.

Octreoscan has three parts:
May 15 receive injection of nuclear isotope, first scan.
May 16 The long scan it is supposed to take one and half hours, it actually took nearly 4 hours.
May 22 final scan.
I suffered with terrible claustrophobia each time, I decide I need to be sedated for any kind of close scans. I know I can not do an MRI while conscious. The thought of having a MRI even unconscious gives me the willies.

May 29, 2008 Appointment Dr. Roberts we get the report of Octreoscan.
Calcified tumor in lower abdomen, probably the primary, not 100%. Two suspicious nearby lymph nodes. Again confirm those in the liver.

Treatment:
Monthly shot of Sandostatin.
Stint thru liver directly to tumor for chemo therapy. Consult with Dr. Palestrant, the radiologist that will do the treatments.

June 3, 2008 First shot of Sandostatin, one sore butt cheek.

June 6, 2008 Appointment with Dr. Palestrant.