Doctor Visit Update, October 1, 2014

Oh, my… it is October already. Happy falling leaves, cooler nights, fading flowers, longer sleeves, simmering stews, and pumpkins in the oven time of year!

Went to see Dr. Picozzi today. Darrel had blood drawn for platelet test and then we waited a while to see Dr. P.

He quizzed Darrel on how he felt and what might have changed since last time. Darrel is always like, “I’m fine, Nothing is different.”

I told the doctor that I had Darrel stop taking the metoclopramide because he was sweating profusely (when he is usually cold) and also I noticed him twitching more than usual when sleeping.

One of the severe but rare side effects of the drug is tardive dyskinesea (try saying that fast even once!) Tardive dyskinesea is abnormal muscle movements, mostly in the face. Can be irreversible if not caught quickly. Dr. P said to cut the dose in half.

Darrel’s platelets had only gone up to 78 and they need to be above 100. We asked the doctor what the options were for standard of care with or without the study. The doctor told us we had 3 options:

1. Wait until next week to see if his platelets come up to where they need to be for the study. That would still depend on them getting the radiologist to ‘change the wording’ on the CT scan results regarding the fluid in his abdomen and pelvis. His platelets have gone up 13 since last Thursday ,so it is conceivable that they will be at the required 100 by next week.
2. Go into the other study that combines Gemcitabine and an antibody that is some how radiated. There is a 2/3 chance for Darrel to get the treatment and a placebo.
And, finally, if he doesn’t go into either study,
3. There is another chemo treatment that includes an oral that is supposed to make a difference in how the chemo hits the cancer cells. It has shown some success. Makes me wonder if we shouldn’t have been trying that for the last 2 months.

The doctor specifically asked Darrel what he wanted to do and Darrel wanted to see if his platelets come up next week so he can get into the study.

So, we have an appointment on Tuesday morning when we will make a final decision.

Darrel has definitely felt better today and has barely even taken a snooze. So, I am thinking the full dose of the metoclopramide was making him sleepy/comatose along with the higher pain meds. We shall see how he is tomorrow.

Courtney has continued to be the wood gathering, cutting, splitting king. He found someone who has a splitter. He went down to Federal Way tonight to get it and the truck hitch wasn’t compatible with the splitter trailer. So, maybe tomorrow.

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Ling Cod in Parchment

This is about my favorite way of cooking white fish that isn’t fried. It is a take on my friend Yvonne’s Mediterranean Chicken recipe. Any kind of white fish will work with this recipe, but I have quite a bit of ling cod from this summer and from our Alaska trip.

Ling Cod In Parchment

Ling Cod filets (or any type of white fish) – a 6 – 8 oz piece of fish for each person
3 – 4 Shallots – thinly sliced
Kalamata Olives – about 6 per filet – cut in half
Capers – about a heaping teaspoon for each file
Cherry Tomatoes – 4 -5 per filet
Basil (I also used fennel fronds since I had them in the garden) – chopped
Salt & Pepper
Olive Oil

Preheat oven to 375 degrees.

Start by cutting parchment paper into big hearts. I have a box of parchment from Cash & Carry but most stores have rolls of parchment. You could also use foil and wouldn’t need to cut it into a shape.

Pour a little olive oil on the right side of the heart. Season the fish filet with salt & pepper and lay it on the olive oil. Sprinkle the fish with shallots, olives, capers, and basil. Drizzle a little more olive oil over everything. Put the tomatoes on top. Then fold the parchment, starting at the top of the heart and ending by twisting the point. If using foil just make a tight packet.

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Place packets on a sheet pan and put in oven. Cook for about 10 minutes depending on the thickness of the filet. Mine were less than an inch.

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Darrel Update, September 30, 2014

Darrel did not have a good day. He slept until about 9:30 this morning, which is unheard of for him. Usually, anymore at least, he has to get up to take his pain meds by at least 7:00 and then ends up snoozing on the couch for a while until they kick in. When he did get up he looked pretty good and jokingly asked if I came in to check to see if he was still alive. Yes, I did!

But, after that, he basically spent all day on the couch sleeping. He did eat a little breakfast. But, when dinner was ready, he came to the table and sat there for a little while, then said he wasn’t ready and went back to snoozing on the couch.

He went to Virginia Mason in Federal Way yesterday to have blood drawn to see if his platelets were up. He also spent some time with Courtney getting more firewood. That is probably part of the reason why he was so wiped out today.

I called today and talked to the study investigator, Megan, and his platelets hadn’t gone up very much. I told her he needed to see the doctor about standard of care even if he doesn’t get into the study.

She called back a while later and we have an appointment tomorrow to have another blood test and to see Dr. Picozzi. We need a plan to improve his quality of life at this point.

It is difficult for Courtney and I to watch him like this knowing we can’t do anything to help. Courtney has been quite the firewood cutting and splitting trooper the last two days. He is paying for it, however, with a sore back and tired muscles!

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Darrel Update, September 28, 2014

Darrel felt better yesterday so maybe his new medication for his stomach and increased pain med dose helped. His brother, Wally, came over and helped him get a couple loads of wood. Darrel said he sat and watched a lot but he also did a lot of work himself. Now it needs to be split. Anyone have a splitter we can borrow? I am sure Courtney would appreciate it, ha, ha!

We actually went out for a while last night, too! We went with the Wamsleys and Josowitzs to the Hydroplane Museum for a fund raiser called Roostertails and Ales. There were different beers, ciders, and wines to try and brats to eat. A band played jazz and surf music. We were home by about 9:00.

Today, Darrel is feeling the effects of doing so much yesterday. He took a couple hour nap in the morning. Then a couple of our nephews came by for a visit. Once they left, he was back on the couch resting with his new quilt I made him.

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I had started it before summer but just pulled it out to finish once the rain started up again. Now, I am deciding what to quilt next!

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Darrel Update, September 26, 2014

Darrel hasn’t had a very good day today. He got up and lay on the couch after taking his pain meds. I went down to Federal Way Group Health to pick up his 100 mg/ml Lovenox this morning. Then did some errands and a Costco run. When I returned home he was still on the couch dozing.

He complained that he couldn’t even drink a little water because his upper stomach area hurt and felt bloated. I called Dr. Picozzi’s office and left a message about his issues.

The nurse called back fairly quickly and asked more questions regarding his symptoms. Darrel was pretty sure the bloating and problems were from the fluid in his abdomen. Dr. PIcozzi seemed to think that the amount of fluid was minimal so probably wasn’t causing this problems. He did prescribe a medication that might help, metoclopramide.

He did rally for about an hour after a neighbor told him there was free firewood on the next block. He didn’t think he could do it but was able to get a small load. It did wipe him out pretty badly, however.

If he continues feeling this bad, I might be taking him to the hospital. Something just isn’t right. Luckily, Dr. Picozzi is on call this weekend so if we do end up there, at least he knows Darrel’s case.

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Investigational Study Screening, September 24, 2014

We got a call yesterday afternoon about 4 from the study investigator asking us if we could come in today at noon for blood tests, CT scan, EKG, and doctor visit.

We met with Megan, the investigator first, so she could review the study documents (which we had received 2 weeks ago and read) and then signed the Informed Consent.

He had many vials of blood drawn, then the CT scan, then the EKG. All that went well. Then we were supposed to have the doctor appointment with Dr. Picozzi at 3:20. We finally met with him around 4:30. I guess the CT scan results weren’t back until then.

There were 2 issues that could keep him from being enrolled in the study. First, he has fluid in his abdomen and pelvis. This alone could disqualify him, but they thought they could review with the radiologist and see if it wasn’t a trace amount that would be okay. I guess the fluid is very common in pancreas cancer patients so it is very frustrating to the doctor that this could preclude patients from being enrolled.

The second issue is that Darrel’s platelets are very low. In fact, I just looked up past results for the year and his platelets are the lowest they have ever been. Dr. Picozzi thought this could be from the Lovenox dose being too low. Darrel has had some problems, as previously mentioned in blog posts,
recently with clots around his port catheter and in his left leg. So, Dr. Picozzi wrote a prescription to increase the dose from 80 mg to 100 mg and Darrel is to have another blood test next week to see if the platelet count has increased.

If so, and the fluid issue is resolved, he would probably start the study in 2 weeks. If not, he is probably still eligible for the other study.

Depressing news for us both as he feels like his health is failing and wants to start treatment sooner rather than later.

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Hello Fall, September 22, 2014

Darrel has not been feeling very good the last few days, but he did manage to play his part in the Des Moines Yacht Club’s version of Laugh-In. He had practice on Friday night and the show was on Saturday. He was the German in the bush who says, Verrry Interesting! The evening was very entertaining!

Yesterday, he still wasn’t doing all that great. We had the Wamsley’s over for the Seahawk game. Marilee had broken her toe so both she and Darrel had their feet elevated. Luckily, the Seahawks were able to pull it out in OT!

I had emailed Dr. Feldman on Sunday relating Darrel’s issues with his calf and pain. The nurse called this morning and had us go in for a doctor visit this afternoon.

The doctor thinks the calf pain is still related to a blood clot not claudication. He wants to give it a week and see if it resolves itself. It is in a superficial vein so is not going to break through and go to his heart or lung. The doctor did tell Darrel to increase his pain medication doses, which I hope will help him with his pain.

We hadn’t heard from the investigator about the study so I emailed this morning. I heard from her within about a half hour. She said he needed to have a CT scan and a screening and asked which days/hours worked. She then said she would get back to me by end of day. Hmmm, still haven’t heard from her. I will call in the morning.

I tried a new recipe tonight for Cider-braised Pork with Onion and Apple Jam. Got it into the oven before we left for the doctor appointment and finished it up when I got home. It was quite delish!

Here is the link to the recipe since I followed it exactly. The only thing I would warn you about is buying the Calvados Brandy. I went to Total Wine and wanted the cheapest one since I was using it for cooking. Some of them were quite expensive – $40 – over $100! I saw one with a sale sign that said $9.99. That was for me! When it was rung up at the cashiers it said $99.99! OMG. I said, No Thanks! I went back, and sure enough, it said $99.99. I did find one for about $17 so bought that. What a shock!

Cider-braised Pork

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Urgent Care Visit, September 19, 2014

Darrel slept basically all day yesterday and then all night last night. He did get up at one point and managed to eat a little dinner. But that was about the extent of his awakeness.

He was tossing and turning and groaning around 4:00. When I asked him if he was in pain, he said he had a bad headache (he never gets headaches but has had them a couple times this week) so I got up and got him a couple of tylenol and pain pills. He decided to go out and lay on the couch.

When I got up he seemed to be doing a little better but lay on the couch most of the morning. (I think the headache was either lack of coffee or dehydration since he didn’t have coffee yesterday and barely drank anything.)

Then about 12:30, he decided to go pick the beans. When he came in his calf was hurting him. (He told me just last night that his calf had been hurting for a week. I was like, how come you didn’t say anything before?! Maybe it is blood clots!)

I called the doctor’s office and talked to the nurse. She spoke to Dr. Feldman and he wanted us to go to urgent care and get a ultra sound.

So, off we went. I dropped Darrel off at the UC door and went and parked. When I walked into the waiting room there was no one in there! Darrel was in triage, so I went in and he was immediately taken into a room. The doctor came in within about 10 minutes! After examining him, he thought it might be claudication.

Claudication is pain or cramping due to inadequate blood flow to muscles. This is caused most commonly by hardening of the arteries. This is probably back to his varicose veins. It gets worse with exercise and can eventually hurt even when resting.

They did an ultra sound and there weren’t any new clots, and most of the old ones were resolved. The doctor came in and said there wasn’t anything urgent since there weren’t clots and to talk to his doctor about the claudication.

After fighting our way home in Friday night traffic, he decided to try to walk around the block. He got up the hill from the house and had to turn around. Came back in great pain. He is now laying with his legs up and took his pain meds.

If your are interested, look up claudication and, so far, the symptoms seem to point right to it. We will see what the doctor has to say next week. The UC doc said it took surgery to repair, but with all Darrel has going on he wanted to give it a week to see how it goes.

Another exciting day in the life of a pancreatic cancer patient and his spouse!

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Endoscopic Biopsy, September 18, 2014

Yesterday morning we received a phone call from Virginia Mason asking if we were available to come in on Thursday morning for the biopsy. We had never heard back from the study investigator so it was a bit of a surprise.

We showed up at about 8:30 and checked in. After sitting for just 5 minutes or so, we were called back to the procedure area. The anesthesiologist, Dr. Wells, came in after Darrel was undressed and in bed with a space age blanket on him.

She told us that the port catheter had blood clots. These had been found by the VM radiologist who looked at the CT scan from the 3rd. This was news to us and I had read through the entire write up on the CT. She seemed concerned about it and was going to contact Dr. Picozzi and told me to call him this afternoon also.

She had read through his entire file, which I thought was pretty unusual, and was concerned about accessing his port for the IV needed for the procedure. She gave me a copy of the VM radiologist’s summary of the CT scan and, sure enough, he noted that there were two small thrombi adherent to the right Port-A-Cath tubing. He noted that they were not evident on the 7/9/14 exam. This could mean that his Lovenox dosage may need to be adjusted or he might need to go back in hospital to get straightened out using heparin.

The doctor, Dr. Gan, who was going to perform the procedure came in and explained what he was going to do. He would put an endoscope through the mouth into the stomach. A needle would then be inserted into the cancer mass on the pancreas through the stomach. He also explained that he was going to do a pain block on a nerve in the pancreas to, hopefully, help with the pain Darrel has been experiencing.

They inject pure alcohol into the nerve to kill it. Dr. Gan said it works about 2/3 of the time. He also said there could be some pain associated with it for a day while the nerve was dying.

When we saw Dr Picozzi last week, he did talk about a block for pain but I thought he was talking about for the biopsy procedure. So this was kind of news to us, but good news.

They took Darrel in at about 9:40 and I went to the cafeteria to get something to eat and wait. They have a pager system similar to those used in restaurants so I didn’t need to wait right there the whole time. They also have a screen on the wall with the patient’s number showing where they are in the process.

I went back and checked the screen and it said he went into recovery room at 10:11. Pretty quick work. They paged me a few minutes later and I went back to his recovery room. He was pretty groggy but everything had gone well.

Both Dr. Wells and Dr. Gan came in to tell me that everything went fine. Dr. Gan said that he was pretty sure the pain block would work because of the reaction from Darrel when they did it. He said that was a pretty positive thing.

Darrel was groaning and the nurse asked him several times if he wanted any thing for the pain. He sat up to get dressed and it increased the pain so I told him to go ahead and get some pain meds now so he wouldn’t be so uncomfortable all the way home. The nurse gave him an intravenous shot of Fentanyl. Within a few minutes Darrel sat up and said he wanted to get dressed.

I went and got the car and they brought him down and we were out of there a little after 11:00 and home by about 11:30. Darrel had some tomato soup and half a sandwich then headed to bed. He will probably be pretty wiped out today but should be ‘better’ tomorrow.

Yesterday he hardly got off the couch so that may be the new normal. But I am hoping he will start taking the pain meds more regularly since they seem to perk him up enough to be able to do things for a couple hours. He is very resistant to taking them, however.

That is all the news until I talk with the doctor.

This is picture of him with the space blanket. It has a hose attached to a machine that blows warm air into channels on the blanket. I had never seen it before.

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Hot Day, Cold Garden Gazpacho plus a Darrel Update, September 15, 2014

Darrel Update
Darrel hasn’t been feeling well today. He is in pain and says he can’t eat much without feeling very full. He ate a little of the gazpacho but thought it was spicy.

I talked with one of the study investigators this morning and decided to put him into the ‘Adaro’ study that involves the GVAX/CRS-207 vaccines. He will need to go for screening and for the biopsy. I am waiting to hear back from that investigator to see when it will all be set up. We can only hope that he is randomly selected for one of the 2 arms of the study that involve the vaccines.

Plus, Group Health approved his treatment for the study! I was amazed at how quickly that happened since I just emailed Dr. Feldman on Friday. We had a voice mail yesterday (Sunday?!) and I called today to find out. They can move quickly on some things!

Gazpacho
Who could believe it would get to almost 90 degrees in Seattle in mid-September! What is going on!

That meant I wanted something easy and cool for dinner. What better than Gazpacho? The tomatoes are still going crazy in the garden, we have a couple of kinds of cucumbers, onions, and plenty of green chiles and jalapeños, so, why not?

All it takes is to roughly chop:

2 lbs Fresh, ripe, garden tomatoes
1/2 Medium sized cucumber (or in my case, 2 small Blonde Cucumbers)
1 Poblano chile (or red pepper)
1/2 Onion – mine was a Walla Walla from the garden
2 Cloves Garlic
1 Jalapeño
1/3 – 1/2 Cup of good olive oil
3 tbls Sherry vinegar
Salt & Pepper, to taste
Avocado (optional)

After chopping, put all the vegetables and bread into a bowl and mix together.

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Put about a third of the mixture into a blender, along with a third of the oil & vinegar, salt & pepper, then blend on the highest speed possible until smooth. Continue with the rest of the ingredients, pouring into a large bowl after each blending. Taste and adjust seasonings as needed.

Chill, or let sit at room temperature, for a couple of hours to blend flavors. Top with slices of avocado and drizzle with olive oil.

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I served it with some open-faced toasted artisan bread with melted cheese. Just like tomato soup and grilled cheese sandwiches!

Courtney said he didn’t think he would like it but thought it was really good!

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