Millers' Time

USA, USA, USA!

So, it has been a few days since my last update. I was thinking to not do as many but have heard from people that they want to know what is going on, so for now I will keep updating once or twice a week.

Darrel was doing fairly well on Thursday after chemo except he had a pain in his left side since Tuesday. We told the nurse on Wednesday but it was a watch and see situation. Thursday it was still bothering him so I called her and we discussed and decided to update her later.

His leg was doing much better, though. Swelling and pain down.

He went down to the marina and fed the fish (his baby salmon in the net pen), went for a walk around the marina, then came home. His side bothered him when he was walking into the wind and breathing harder. We did a little shopping and he took a nap when we came home.

Friday, his side pain was better but after emailing update to nurse, she talked to the oncologist and they thought he should go to urgent care to see what the side pain was about. So, back to Capitol Hill we went. We were concerned it might be another pulmonary embolism (PE).

The doctor did a physical exam and reviewed his CT scan results, talked to the Oncologist, and us. His symptoms didn’t seem to indicate a PE. The CT scan showed the spleen was being encroached upon by the pancreatic tumor and it also showed a clot in the splenic vein. She determined that this was what was probably causing the pain.

The Urgent Care doctor was also a Hospice/Palliative care specialist so we discussed pain management. I think we have him on a pretty good regimen now.

She was another great doctor. Been very impressed overall with the GHC docs we have had. Her and Dr Feldman decided less was better so no scans or anything else and we were cut loose after just a couple hours. Yay!

He was feeling pretty darn good on Saturday and washed both cars and RainXd the windows. He decided to put some air into the wheelbarrow tire (we use it to haul wood to the back door for the fireplace) and the tire and rim blew out cutting his thumb pretty badly. Everything and every doctor and nurse has told him to be extremely careful not to cut himself when on chemo (infection) or blood thinners (bleeding out), but you know Darrel, can’t keep him from doing things!

We cleaned it, put antibiotics on it, and wrapped it well and back out he went. He did go out and buy a new wheelbarrow on Sunday instead of trying to repair the rusty, ancient thing. His thumb is still looking pretty good so, hopefully, no infection.

Sunday was another good day. He read the paper, did the crossword, laughed at the comics, made himself breakfast, shoveled the sidewalks, went to buy the wheelbarrow, then went to the marina to check on the fish. Kept himself pretty busy all day. I quilted and watched Olympics on my iPad while sewing. Went to dinner at some friends and had a good time!

Today, he went to his mom’s and got his haircut. Came home and some friends stopped by for a while to visit. Garry Wamsley and Brian Halvorsen came by to help put the distributor back in the boat and do a few things to it. Guess what?! The exhaust manifolds were cracked from the freeze.

Darrel puts a work light into the engine area when it freezes, and we have never had a problem. This time, he used an energy efficient one and it doesn’t get warm enough to keep the water from freezing. So, brand new engine and already needs replacements! Will it never end?

But he was doing very well today and we just keep on keeping on, one day at a time.

Thanks to all once again for all your thoughts and prayers!

Your Olympics watching and Quilting Fool,

Robin

Super Bowl Seahawks Celebration Day!

Sunday was a fairly ‘normal’ day for us. Darrel read newspaper, comics, and did the crossword puzzle while I caught up on some cleaning.

We went to the club for a few minutes to drop something off. Saw and talked to some of the people waiting for the Super Bowl to start. We didn’t want to stay because some people knew and others didn’t so we figured we wouldn’t be able to watch the game due to having to explain to all those who didn’t know.

Watched the fantastic Super Bowl win by the Hawks and were able to forget about things for 4 hours or so! What a great game.

Monday was Darrel’s 60th birthday. He was feeling pretty good and had gone all night without having to take pain meds. Darrel’s mom and my parents came over for lunch.

Then we had two couples over for dinner. Darrel laughed a lot with the guys. As most of you know, he laughs a lot anyway, but not so much the last week so I really appreciated them for that. Again, it was a time to get his mind off of things for a while.

Tuesday morning his foot and leg swelling was down significantly! Still hurt, but that is a good sign of either the blood thinners or chemo working, or both. Once the leg gets better and he is able to walk and stand without it selling or being so painful, he will be able to get active again.

Wednesday was 2nd Chemo day. The Seahawks parade was today so we left plenty early and took a couple back roads to Group Health Capitol Hill. Took about and hour and a quarter, but that wasn’t too bad.

Had an appointment with the nurse so she could do a chemo “teach” about all the do’s and don’ts. Then he got his chemo infusion. The infusion suites are nicer than I remembered and have TVs so we watched some of the parade.

Got home around 2:30, not bad traffic after we took the back road to the freeway. He had a nice hour + nap. Seems to be fatigued a bit which is to be expected. Not a big appetite either but still eating a fair amount.

Super Super Bowl Winning Seahawks Fan, Robin

2/1/14 – Super Bowl Eve

We were so excited when a few minutes ago Dr Masonis walked in. She was his internal med specialist all week and works 7 days on and 7 off. She is so great and she knew our case so we didn’t have to go through everything again. Finally, something went our way.

She is quite sure it is either cellulitis (infection of the skin) or phlebitis (inflammation of the vein, which is part of the issue he has had along with the clots.) So, if his fever stays down and his blood work is good, he will get to go home this afternoon.

We are reconvening with her at 3:00

Parked in the other garage today 😉

2/1/14 – 23 hours until Super Bowl!

We are home! Yay!!! The blood work wasn’t going to be back until midnight so Dr Masonis released us without seeing her again and will call when she gets it back.

He is on oral antibiotics for 7 days and hasn’t had a fever all day.

I am making him fried pork chops, mashed potatoes and cream gravy, and green beans for dinner. That was what he had requested for dinner on his first night home last night and I had it all ready to start when his fever shot up.

Go Hawks!

Blue Friday – Go Hawks!

Okay, have to fess up. After I sent the email yesterday they decided to keep him in overnight. Partly to get him going on the injectable blood thinners and also to get him off the injectable pain meds.

Actually a relief for me, because his discharge meds would have been a trip to the Group Health on Capitol Hill and I know that they can take a while.

So, he seems to be doing better this morning. No IVs going in, even though they still haven’t taken the 2 lines out of his arm. Spirits might be a bit better too.

I have him all packed up and we are just waiting now for the doctors to come and give him his marching orders.

Good news! Darrel gets to go home tonight!

He will be on the twice-a-day blood thinner. Waiting to talk to doctor about pain management.

The swelling and pain in his leg has not gotten much better. That is my biggest issue with him going home since I have had to watch him suffer so much trying to control it last weekend on oral meds. But, I will be the nagging bitch to make sure he is comfortable.

Unless something else happens in the next couple of days, I won’t send another email. Maybe next week after chemo and oncologist visit.

Again, thanks to all for your thoughts, prayers, and support.

The nagging bitch patient advocate, Robin

So, the update for today:
The oncology doctor met with us this morning and we discussed chemotherapy treatment options. There were two. One is more toxic than the other, so he recommended the less toxic to be able to keep some quality of life while undergoing treatment. We pretty much agree.

He will probably get his first dose today or tomorrow. Then it will be once a week for a total of 3 weeks, then one week off. This will go on for 2 months, then they will do another CT scan to see how it is working. If working, he will continue with chemo basically for the rest of his life with time off for good behavior if we want to take a vacation or something. That can be worked around. The doctor is very concerned about having quality of life.

There are, of course, side effects to be expected. This regimen seems to have less hair loss and stomach issues. It can cause problems with red blood cells so might need transfusions. And white cell count, so infections could set in. Also can cause neuropathy in the hands and feet. Fatigue is also common with any chemo.

The doctor just came back in and we are going to get started on it today. And the good news with that is they moved out his roommate and he now gets a private room. Yay!

He is also on a heparin drip (blood thinner) to try to get the clots under control. That is why he is in hospital since neither the warfarin or the Lovenox was working. Once that gets under control he will be on the injectable Lovenox twice a day instead of once like he was. His right leg is still very painful and they have him on oxycodone orally and injecting morphine every few hours.

He just got up and walked down the hall twice – first time since Sunday he has done more than go to the bathroom. He also took a shower – Yay! Hasn’t shaved for a couple weeks tho.

I have made the calls to get his retirement going and have also started the application for Social Security disability. We are trying to get this all in the works as it takes a couple of months for both.

Just to be clear, there is no cure for pancreatic cancer in his case. The chemo if it works well with him, may increase his life span for a couple of years. Or, he may have just a few months. They just don’t know.

This is what is taking a while for us both to digest. His brother stopped by today but he doesn’t want anymore company for a couple of days while he adjusts to this idea of death. It is hard on both of us to talk about and to see others, so give a little time. Email and text message are fine.

Follow up email 1/29

Darrel had his first chemo tonight. Two different drugs in two infusions. He did not have any allergic reactions, so that is really good. Side effects don’t typically show up for about a week, so he is feeling fine.

I have contacted most everyone that I could think of or left messages for those I couldn’t get a hold of, so it is okay to spread word. If I missed someone, I’m sorry, but it is hard to remember everyone and harder still to talk about. Again, just ask that they email or text me until at least Friday.

Thanks again for all your offers of support. I know it is there when we need it in the future.

Still not sure when he will be out.

1/28/14

To the point, Darrel has been diagnosed with pancreatic cancer.

Background:
When we were in Mexico, his right leg was swollen and a bit painful. When we got back he was diagnosed with blood clots. At first just superficial, then DVTs.

He was put on Lovenox and warfarin, then just warfarin on 12/6.

His legs continued to get worse and develop clots until shortly after Christmas he was in enough pain that he wanted pain pills – he had never taken them in his life.

He worked on January 2 but was unable to go back on the 3rd. Worked again on the 17th and 21st, trying to just grin and bear it, but the pain was unbearable.

We have seen an internal med specialist, a vascular surgeon, and then another internal med specialist. He had several ultra sounds. They did blood tests of all kinds and they all came back negative.

Finally, last Thursday, they decided the warfarin wasn’t working for him and put him back on Lovenox. Over the weekend he worsened to where he could hardly walk. I emailed doctor on Monday and they called and told him to go to urgent care.

We spent a lovely 7 hours there. He got an ultra sound again and a blood test. His INR came back at 1.1 so they decided to put him in VM and put a filter in his vein to catch clots and also on Heparin. So that was Monday night.

Tuesday morning they did a CT scan. We had gotten one scheduled at GHC but it wasn’t until the 10th. I had asked the doctor last Friday to get it moved up, but…you know how it can go sometimes in our system.

They found lesions on his pancreas and ‘innumerable’ ones on his liver. I read the CT yesterday. He had also had a clot go into his lungs at some point, small so not a lot of damage.

Just so happened Dr Eric Feldman was the oncologist on call here at VM this week so he will be his oncologist. We talked with him on Tuesday and he thought they would do a biopsy on Wed but they would have to take him off the heparin for 8 hours. They had sent off the CA 19-9 blood test too which would be an indicator of pancreatic cancer.

The CA 19-9 came back at over 60,000 so they said they wouldn’t do a biopsy because of the risk of clots, etc.

Had his first chemo yesterday. Gemcitabine and Paclitaxel. 3weeks on, 1 week off for 2 months, then another CT.

So, still in hospital trying to get blood clotting levels where they want them on heparin, then will switch him to twice a day Lovenox until that levels out, then home.

really Blue Friday now

We got home around 10 this morning. Darrel was happy to be home and able to do something like chop some wood and kindling. I know, I know. But it made him happy to be able to do if only for 15 minutes or so.

I ran errands and came home around 11:30 and he was on couch dozing and ready for next round of pain meds. After about 45 minutes he was sitting up and computing a bit.

His brother, Ed, came over to visit around 4 so I headed to a friend’s house to catch up and have a drink. Got home around 5:30 and he was on couch taking his temp and he had a fever of 102. 5. He had been having chills and was warm. I got out the discharge information and it said to call for temps of 101+.

So, called Consulting Nurse and, you guessed it, back to the hospital ER. They did blood tests, EKG, xray, and listened to lungs. His temp had dropped again but they gave him a bag of fluids and some tylenol.

The doctor came in and said he had what might be pneumonia, slight whatever showing on xrays but he didn’t have a cough or anything. His right leg that is giving him so much trouble also was a bit red on the top of his calf and it might be cellulitis. Plus, his blood counts were off. So they aren’t quite sure what is causing it but some sort of infection.

So, back into the hospital for antibiotic treatment. Hopefully, only overnight.

The real kicker to the day though, was when I went to go to my car in the parking garage. First, you exit the ER onto the street. All the doors to cut through the building were locked so I had to walk around the block since I was in a garage on opposite side. No big, right.

Get there and the door I came out of was also locked. I go to the ramp into the garage and there is a gate down so I can’t get in that way. I got to the other garage and ask how to get in. The guy says, oh it is after hours and you shouldn’t have parked there.

By this time I am tired, cranky, haven’t eaten dinner, and getting really aggravated. I said the garage said OPEN, and there is still a sign there saying PATIENT PARKING. He is like, well it is closed. He had to call security who came and picked me up and took me to my car (there was another guy trying to get in to, so it wasn’t just me!)

The only good thing was – I didn’t have to pay for parking!

I will let you know what happens tomorrow.

FAQ answer of the day:
For all you inquiring minds – Darrel will be 60 on Monday.