Millers' Time

Went for the CT scan today.  Doctor called about 5:30 and said the results were not good.  The cancer was still growing in the liver mostly, despite the chemo.

Darrel and I had already decided that we wanted to go ahead with the next drug, oxaliplatin, combined with 5FU before we went North on the boat.  We didn’t want to go for another 2 or 3 weeks (along with the 2 already) without any treatment.

The doctor was not very hopeful that the drug would help and was concerned that Darrel might be sick and not enjoy the vacation.  Since he has handled all the other chemos so well, we are hopeful that this first treatment won’t affect him too negatively.  If it does, well, we will just head home or fly him home.

Everyone had already gone home in the infusion center by the time the doctor called, so we don’t have a time for chemo tomorrow.  The doctor sent the charge nurse an email, and I will call first thing in the morning.  Quite sure they will get us in.

The good news is that the boat is fixed and we have started loading it.  We still hope to leave on Friday, but will play it by ear.

Darrel has still been feeling quite well.  His hair has even started growing back, even though they figured the last chemo would make it all fall out.

All is not lost yet!  He is a stubborn ass, as many know, so he could just baffle the medical establishment yet!

9:00 AM appointment with doctor today. Traffic was awful going in so we were 10 minutes late.

The CA 19-9 results weren’t back yet when we met with the doctor. As he has said previously, the CT scan is the gold standard for determining whether the chemo is working, so he wanted another one before administering the chemo.

He couldn’t get an appointment at the Seattle campus in the next few days, but was able to get one tomorrow at Bellevue at 2PM. (Another fun drive, I am sure!)

Then, we have a phone visit with him at 4:20. Depending on the results, Darrel will probably have chemo on Thursday. There is another drug to add to the mix, but it is the last one available and he doesn’t want to add it unless he is sure these current ones aren’t working.

As some of you know, we were planning on leaving on the boat to Canada tomorrow. At this point, the boat isn’t working right anyway. Darrel spent all day yesterday replacing parts but it still won’t work right (a fuel starvation issue, we think.)

He took it to the shop this afternoon and hasn’t come back. I think he might be waiting to make sure they work on it. They were supposed to plug in a computer yesterday but never made it. It is their busy season, but don’t tell someone you will do something then never show up!

I will post tomorrow or the next day with CT results.

I emailed the nurse yesterday morning regarding the tumor marker test. She was able to see it on her end, and when I looked again, it was there. We never did get an email saying we had new test results.

Sadly, the marker was the highest we have seen it – 78,614. Last time it was 34,470. After the first chemo round it went down to 27,959. The original test when he was in the hospital was around 60,000. We did not view this as very good news so emailed the doctor to see if anything could be done this week instead of waiting for his next appointment on Tuesday, July 8.

The doctor replied at 10:00 last night. He said that sometimes the markers go up at first even when the chemo is effective. He wants Darrel to go in tomorrow for another test so that we can make a decision on treatment change for his appointment on Tuesday.

Previously, the doctor had also said he didn’t want to depend on the tumor marker because it could be all over the place. That is why he schedules CT scans fairly often.

And so it goes…

Rather frustrating, but we have not received the test results back for Darrel’s tumor marker.  I am thinking they didn’t do the test even though we had the blood drawn specifically for it.  When I checked on Wednesday, the nurse said they don’t always do the tests every day.  I will have to contact them tomorrow about it.

We have been waiting to hear so we could decide on our trip to Canada.  We were thinking of being gone for a month and flying Darrel back for one treatment in the middle of that time.  If the treatment is not working, there would have to be another change in his treatment.

If it was working, there was also the possibility of pushing the treatment out for 3 weeks instead of 2 and just coming back earlier.  It all will depend on the test results.  The doctor definitely did not want Darrel to go a whole month without treatment.

Darrel is still doing very well.  He is busy around the yard and just finished getting the crab pots ready for the opener on Thursday!

Darrel went in for chemo on Tuesday. He has the blood draw first through the port, then a wait for 45 minutes to see doctor. They prefer drawing the blood and waiting for the tests to assure the proper tests are done, so we have to go in early (8:15 AM) and doctor appointment isn’t until 9:00. It also means early morning traffic!

The doctor was pleased that Darrel is handling the chemo so well. His lab tests were all good, too. There wasn’t an order in for the tumor marker test, CA 19-9, so the doctor put that in to see if the chemo seems to be working. He had to have another blood draw for that test. We are still awaiting those results and I will post when we get them.

Went for the infusion and the first medication (irinotecan) came fairly quickly. It takes an hour and a half to infuse, so we always have reading materials and I have my iPad so did a little shopping on Amazon for our boat trip.

The 5FU medication is the one that goes into a pump and infuses over 46 hours. That always seems to take longer for some reason (I will have to ask my pharmacy contacts!) It was another 45 minutes after the first one was done before we got it and were able to go home.

Darrel continues to do well on this chemo. He had some nausea on Tuesday night but smoked a little pot and it went away. He also takes dexamethasone, a steroid, and ondansetron, anti-nausea, for the two days after his chemo visit to help with the nausea.

The pump finished up an hour or so ago, so I took it off. That involves cleaning the connection well with alcohol, allowing it to dry, then flushing the lines with sodium chloride and a syringe of heparin. I then carefully remove the tape patch that covers the connection to the port, and pull needle from the port. The needle seems huge but it doesn’t really hurt too much going in or out. The needle retracts when pulled out but you can see how long it is.

We continue on our anti-cancer diet eating. Darrel has been walking fairly regularly, I was but haven’t for a week and a half so need to get back into it. His weight is down but the doctor isn’t concerned. His initial weight loss was when he was so sick with the blood clots, and then the initial chemo. Now with cutting out sugar and flour, along with the walking, he has dropped some more. We will try to maintain his weight.

Today was chemo day once again. Had a doctor appointment first. I guess this chemo regimen, we have a doctor appointment every time since it is every 2 weeks. Before it was only the 1st day of each month-long cycle.

Appointment was at 9:00 so it was an early start for us. We never know what the traffic is going to be like so we usually allow at least an hour, if not a little more.

Traffic was actually pretty good! We were about 15 minutes before the appointment (they usually ask you to be there 10-15 minutes before, but our experience is that we usually wait a long time after our appointment time.)

The appointment was with an oncologist we haven’t seen before. Since they all take turns doing rounds, they all see each other’s patients when they are in hospital. They have all been great and she was too! Very attentive and looking out for the patient.

Darrel’s labs were pretty good. Usually he has some that are high and some that are low, but this week, they were mostly in the normal range. Blood count was low, but that has been pretty typical. So, on to the infusion center.

I have to say, that the staff in the oncology area are all really good. They are friendly, empathetic, and know their patients. We had Vicki, the Kiwi from New Zealand again this week. While she was the one who always had problems hitting his vein in the beginning, now that he has a port, it isn’t a problem.

She is funny, nice and very concerned. Last week, her and I had a little talk about things, and she recommended a couple of books. Anti-Cancer and The Instinct to Heal, both written by David Servan-Schreiber, MD, PhD.

I read Anti-Cancer, which is a lot about eating anti-inflammatory and anti-cancer foods with examples and data to back it up. There is evidence to show that many of these things work, but there aren’t too many clinical trials done on nutrition since no one can make money off of food like they can drugs.

We decided that it certainly can’t hurt to eat the healthy foods recommended, so we have been doing that for a little over a week. Mostly it is cutting out wheat (a highly inflammatory food) and lots of cruciferous vegetables and colorful vegetables. Not too different than we normally eat, except NO sugar. That is probably the hardest for Darrel as he does like his sugar foods.

Darrel has been doing very well since the last treatment. He didn’t experience any nausea from it, and didn’t get hit with the dreaded diarrhea on the 11th day as warned about. He also didn’t seem to experience any negative effects from the steroids that are taken for anti-nausea. At least he wasn’t any worse than normal – ha, ha.

He went halibut fishing last Friday and Saturday, out of Port Angeles, with his buddy, Max. They caught one on Friday, and 3 dog fish on Saturday. Not too successful, but they had a good time and great weather on the water.

We both have started walking on a regular basis, and have been busy around the yard and house.

Not sure if I had mentioned that Courtney was living with us again. He has been helpful getting a new chicken coop ready for my 2 new baby chicks. They need a place of their own until they are ready to face off against the BIG girls.

Life goes on in the Miller household for now. We will see what happens the next 2 weeks of this treatment, but, hopefully, it will be as non-eventful as the last 2.

That is is for now, hope all is well with all of you!

Your friend, Robin