Millers' Time

Got back from our Sitka fishing trip on Sunday evening. We had a good trip. The weather was amazingly great! Sunny every day for the most part. Not too much wind. Robin didn’t get seasick!

We caught a lot of salmon, a little halibut, a few yelloweye rockfish, and a ton of Black Sea bass.

Darrel started his new chemo regimen today. The first infusion took about an hour and a half. The second one is through a pump for the next 2 days. We go back in on Thursday to get it removed. They will show me how to do it then so we don’t have to go in to have it done in the future.

To keep the nausea & vomiting down, he was given dexamethasone (steroid) today along with the ondansetron anti-nausea medicine. He has to take both twice a day for the next 2 days. The steroids have their own unpleasant side effects, so will have to be watching for those – sleeplessness and ‘roid rage’ are 2.

We just got home and he isn’t having any problems with anything yet, so that is good. We don’t go back again for 2 weeks now for the 2nd treatment.

Until we know more about how this is going to affect Darrel, hold off for 24 hours on the calls unless you email first, in case he is sleeping. Thanks!

Last week, Darrel had a CT scan on Monday and no chemo. He felt pretty darn good and was quite active building a fence at our rental, capturing bee swarms, and working around the yard.

Today we had a doctor appointment to review the CT and chemo scheduled for after. There was a bit of a mess up as they called us at the last minute to change our 10:20 appointment with the doctor since he got tied up at the hospital. We ended up seeing him at 1:00.

The CT scan showed the tumors increasing again so the current chemo regimen has stopped working. The doctor wants to try him on a new chemo regimen starting next week. He will be on 5FU (flourouracil) and ironotecan. The ironotecan is about a 2 hour infusion and the 5FU will be a 48-hour pump that he will wear home and then have to go back in to have removed.

This is the more toxic regimen that we were hoping to stay away from, but the current treatment isn’t working. He will receive it every 2 weeks until they do another CT scan to determine if it is working. There is a good possibility that they will add in another chemo, oxaliplatin.

These drugs can and probably will cause severe diarrhea, mouth sores, and more neuropathy in the hands and feet. The doctor said that the rest of his hair will fall out.

The doctor told us to go to Sitka (tomorrow) and catch a lot of fish and then the new treatment will start next week.

Disappointing news.

Your hopefully-not-seasick, Sitka bound friend, Robin

Seis de Mayo, 2014

Got up bright and early this morning to get into Seattle by 7:30. Luckily, the traffic was really good for that time of morning.

We were put into one of the private rooms and the nurse took Darrel’s vitals and asked if he had had the Lovenox (blood thinner). He did inject last night before we remembered that he wasn’t supposed to. She was worried that they might not do the port insertion because of that. I was thinking, we better not have got up early for nothing!

They hooked up an IV, took blood for some tests, and then we waited to find out. A little after 8:00, an assistant came with a wheel chair came to take him down to radiology. There had been a consultation between the doctor, nurses, and the radiology physician’s assistant (PA) and they decided if his white blood count was over 500, they would go ahead. It came in at 1600.

The PA reviewed the process, showed us what the port and catheter looked like (bigger than we thought!) First, they gave him some sort of relaxant medication, wiped the area with antiseptic, covered him with some sort of ‘shield’ except where the incision would be. He couldn’t see any of it, which he didn’t mind.

They injected a local anesthetic and made a 2″ incision just under his right collarbone. Then more anesthetic was injected so an area could be ‘carved’ out to hold the port. (The port is probably about an inch in diameter, and 1/2″ – 3/4″ thick, with a catheter about 10 inches long.)

The major vein that is in that area was widened somehow, she didn’t really describe that. The catheter was then threaded into the vein which leads directly to the heart. The port is kept in place with a couple of stitches.

Then the incision was closed using dermabond, kind of like superglue. The nurse said that was better than stitches because he wouldn’t have been able to take a bath for 5 days with stitches. Something to be thankful for on my part, anyway!

Darrel said the whole thing went smoothly and he didn’t feel a thing. He was back in the room in just over an hour.

The chemo came an hour or so after that and they used the new port to infuse it. He didn’t feel anything when this was done.

The nurse then gave him his discharge instructions for the port. No lifting or straining for 7 days. Oh, really? We are going shrimping tomorrow and the pots weigh about 50 pounds. Luckily, Courtney is going with us so he will get the exercise instead. We are also going on Saturday, so we will have to find someone to go with us.

It is probably for the best because we went last Saturday and even though he got help from the nephews that went with us, it was a lot of time on his feet and lifting those big pots all day. He was really wiped out after that!

Then when we got home, he decided to check his bee hives. I didn’t think much about it until he came back in and told me one of the hives had enough honey to harvest so he had to pick up the box and put this thing in that keeps the bees out once they leave…the box only weighs 30 – 40 pounds! Hopefully, he didn’t tear anything!

He is snoozing right now but seems to be feeling okay. Will let you know how the shrimping and port get along.

Happy Mother’s Day to all you moms.

Courtney’s Mom, Robin

Sunny Skies ahead!

Sorry it has been a couple of weeks since the last update. We took a weeklong road trip to the Oregon Coast from April 15 – 21. When we got back I was having trouble with the computer I use for sending the updates out.

The weather could have been better for the trip, but we had several nice days. Overall, it was a very relaxing time. We stayed in some nice places, discovered some unusual ones, and had a wonderful experience in a Bed & Breakfast for our last night in McMinnville – A’ Tuscan Estate – with a real live French chef who made a fabulous breakfast.

Darrel did very well for the whole trip. Probably because he wasn’t doing stuff all the time like he does when we are home. He drove the whole trip, over 1,000 miles, and it didn’t seem to bother his feet.

Chemo last Wednesday went well. Darrel seems to be handling it better for some reason. He hasn’t crashed out for hours the last 2 times like he was before. He made arrangements to help a friend move bee hives last Thursday and was gone for the better part of the day, without feeling too bad that night.

We left Friday on the boat for a 3 night, 4 day cruise. The weather turned out much better than expected and we had a great time.

We had a phone appointment with his oncologist yesterday to discuss having a port put in. This will be used for both giving blood and getting chemo. As I have written, some of the nurses seem to have trouble finding his veins. Plus, the chemo can eventually make the veins worse. The port will be inserted on May 6.

He also has another CT scan scheduled for May 12. The latest tumor marker lab test came back just saying “Over 10,000.” This seemed strange to us since we have been given exact numbers in the past. When we asked the doctor about it, he was seeing the same thing. So, the doctor wants to depend on CT scans to determine the effectiveness of the chemo.

I will update again tomorrow or Thursday after his chemo visit.

Your Not Yet Blog Ready friend, Robin

A beautiful day in the Great Northwest!

Chemo went very smoothly today. Darrel only got poked once to hit a vein! That is like one of the first times for that! The first chemo came pretty quickly. No problems there.

Second chemo took a little longer, but it is a harder one to mix for the pharmacy (takes a long time to dissolve.)

So, we were out of there in about 3 hours this week. One of the quickest so far. Of course, we didn’t have a doctor appointment either.

Darrel was doing pretty well afterwards too. He did lay down on the couch about 6:00 and is snoozing now.

I want to thank everyone who came to Darrel’s party. It was an amazing to see everyone. Darrel had an awesome time! He really enjoyed it (which was the point!)

He has kind of been paying for it, however. His feet have been hurting him from standing so much. It is neuropathy from the chemo that is affecting his feet so much. Hopefully, it won’t get much worse.

We are amazed and overwhelmed by what wonderful friends we have. There was so much help at the party that both Darrel and I were able to spend the time with friends and family (very little time for each person due to the number of people, though!)

The next morning everything was pretty well cleaned up when we got there at 9:00. And, breakfast was being cooked, champagne was opened, and a good time was had by all at the so-called ‘clean up!’

We are very lucky people to have such good friends and wonderful family.

Thank you so much!

Your very weepy, grateful friend, Robin!

Good news, Bad news kind of day

Saw the doctor this morning and got the results of the CT scan. There were reductions in the size of the largest lesion on his liver and elsewhere, so the chemo seems to be working. Good news!

So, Darrel will be staying on the chemo regimen of 3 weeks on and one week off. Today was week one of this cycle.

Darrel has been feeling pretty good but was having some pain/discomfort in his shoulders and neck. Not sure if it was from the cancer or from using the machete while mushroom picking. So, he started wondering about how things would go.

He asked the doctor what the life expectancy and progression was going to be like, as best as he could anyway. The doctor said months not years, but that he could always be wrong. He also said, though, that since Darrel was tolerating the chemo so well that was a good sign. However, this was rather upsetting as we had been thinking more along the lines of a couple of years. The reason for this is that the liver has ‘extensive metastatic involvement.’ Bad news!

So, as I said good news, bad news kind of day.

A Beautiful Day in the Northwest!

Today was chemo day. Darrel forgot to get his blood taken for labs yesterday so had to do that first. Then we had an appointment with Dr Feldman before the chemo.

Dr Feldman confirmed that the CA 19-9 test results were a positive sign, but that the CT scan next week is the ‘gold standard.’

Luckily, Darrel’s labs came in before the appointment was done. (Dr Feldman was running late so we didn’t get in to see him until about 1/2 hour after our time.) Darrel’s white blood count was pretty low and Dr Feldman was concerned about infection, so decided to call off the chemo for today.

It was like getting a whole day back! And what a beautiful day to get!

Courtney was at the house so he helped Darrel with a few things. Then we launched the boat to give it a trial run before the club cruise this weekend.

Things were going well and we were enjoying the calm, sunny water when I heard a loud whine coming from the engine.

(When it had been in the shop getting the fuel pump replace, the mechanic said he had heard the whine and thought it was the gimbal bearing. We just had the gimbal replaced when we put the new engine in. When Darrel got the boat home and tried it in the driveway, the whine was gone. So, he didn’t take it back to the original mechanic who had replaced the gimbal.)

So, back in the shop the boat goes. Hopefully, it will be ready for the weekend.

We aren’t sure whether to be glad his count was high so he didn’t have to have chemo, or what. But, we are taking it as a good thing since he isn’t feeling bad, laying on the couch sleeping, AND still had energy today!

Don’t forget to RSVP!

Off to Spring Training Next Week for this (fair weather Phoenix) Mariner Fan,
Robin

Rain, rain, go away!
It has been depressingly rainy the past few days and more to come, for those of you not in the area!

Chemo today went well. No problems with getting the IV in! The IV pump kept beeping and they had to take air out of the line a couple of times and adjust the lines a couple more.

Darrel has been doing very well! We even took off last Thursday and went to Long Beach (WA) for a couple of nights of razor clamming with the Wamsley’s. The weather was absolutely fabulous! Especially on Friday when it hit 67 degrees and I was digging clams in short sleeves!

We also went to the Commodore’s Ball at the yacht club on Saturday night after driving home that morning. It was a great time but no dancing for us. Darrel’s legs were paying the price for clamming so we left fairly early.

Darrel gets regular blood testing done. One of the tests that is an indicator of cancer was extremely high when he was in the hospital. They retested last week and we got the results a day or so ago. I wasn’t sure what they meant but the number was more than half the baseline test. I asked one of the nurses today if that meant the chemo was working to slow the progression and she said she thought it was. Then I did some research when I got home and that does seem to be a positive sign.

We will find out for sure when we see the doctor next week and then after the CT scan on the 19th. But, it is a hopeful indicator that this chemo regimen might be working for now to stop the spread of the cancer.

Your positively hopeful friend, Robin

Happy Anniversary to us!

Yes, it is our 32nd anniversary today. What a way to spend it!

Back to chemo this morning after a week off. Darrel was doing really well and said he felt ‘normal’ the past week.

Chemo went okay. The chatty nurse from New Zealand, a self-proclaimed Kiwi, was with us today. She is quite amusing and fun to talk with. However, she also had an issue with the IV.

She found a good vein in kind of an awkward place on the back side of his arm. She slipped the needle in easily enough but when she was flushing it, she pulled it right out. She was quite embarrassed, especially after we had been telling her about the student nurse incident last time.

The first chemo came quickly but then the second one took about 45 minutes. So we were there for about 3 hours this time, 11 – 2.

We were both pretty hungry so we stopped in Georgetown at the Jules Mae Saloon for lunch. We got a pitcher of beer and a burger for Darrel and a pork sandwich for me. Both were really good!

After that, we went down and fed the baby salmon at the marina. For those of you that don’t know, Darrel is involved with Trouts Unlimited and for the last 4 years and has been responsible for a net pen of baby salmon. They are fed once a day or so for about 4 months then are released into the Sound. They come back after 2 years and go up the Des Moines Creek, or swim in circles around the marina.

Came home from that and Darrel laid down and fell asleep for about an hour and a half. Amazing how quickly the chemo fatigues him. The only other issue he has had from the chemo is his hair is starting to fall out. He finds a lot in the shower drain each day, but, from what the nurse and doctor said it may not all come out. We are hoping anyway. It is a daily, visible reminder of what he is going through and what is to come.

That was our exciting anniversary. Hope we have many more.

One more thing, I will be sending invites out but I am having a retirement/60th birthday party for him at the club on March 29, so put it on your calendars now!

Your Old Married Friend, Robin

Bad Luck Week!

3rd chemo treatment today. We saw Dr Feldman, Oncologist, before the chemo. He did an exam, checked Darrel’s labs (good to go for chemo), and answered questions.

Since Darrel’s legs were better we wondered if he would eventually be able to get off the blood thinner, but, no. The doctor said that the cancer is causing them and they might come back if he stops.

We have had suggestions about supplements and other things, but he said the evidence doesn’t support these things. Plus, if we add supplements it might affect the chemo.

He wants another cycle of chemo, then another CT scan to see if it is working. That means next week is an off week (yay!), then back on for 3 weeks. During the off week following that he will have the scan. Then we meet with Dr Feldman again. If this chemo regimen is not working, he might need to go to the more toxic one. Or, not, as we decide. It is all about quality of life.

So, on to chemo. The nurse came in and said she had a student nurse and would it be okay if she put in Darrel’s IV. Sure, why not?! She put it in they started the sodium chloride drip. Then they came in and put in the first chemo drug, gemcitabine, as usual they said it can sometimes burn. He hasn’t had a problem with it the last two times.

Almost as soon as they left, he said it is really burning. Then he was like, it is hurting really BAD. I ran out and got a nurse who came in and stopped it, looked at his arm, and it was all swollen up. She disconnected everything and took out the IV.

The IV needle had only pricked the vein and when they pumped up the drip it blew out. OUCH!!!

So, another IV went into the other arm and it started again. That one started to drip, so I ran out again and got the nurse. The connector wasn’t tightened enough (the nurse said they had been having problems with that lot). So, finally they got things straightened out and it went well after that.

So far, Darrel doesn’t seem to be having any bad side effects from the chemo except a bit of fatigue. He was fading a bit this afternoon and has been snoozing on the couch for the last couple of hours. No nausea, rashes, or anything else yet. His appetite has been pretty good this week. We can only hope this will all continue.

The reason I started by saying bad luck week is that on Monday we found out the exhaust manifolds were cracked, then on Tuesday, my tire blew. Then today this!

But, the good news is that we are planning a fishing trip to Sitka for the BIG KINGS in May with, hopefully, brother Ed and friend Max.

The Bad News Bear, Robin