Weaning off the walker

Doug has been good about using the walker. I know he'd rather not, but I confess I am sort of paranoid about him falling again. 

Last Monday Dr. M, the Denver specialist, was scheduled to call us via Cisco Webex video. One of his nurses called to say that he was running late. 30 minutes later he was not available yet, so the nurse asked if he could call later rather then leaving us holding the phone. He finally did call, but we just did a plain conference call without video. That's fine with us. He said for Doug to get off the percocet and try ibuprofen for the back pain. That worked very well. Now he is not even taking that, and feeling better, except for some intestinal issues. 

Dr. M asked about the plasmacytomas. They are not painful; Dr. M says if they do start to bother Doug, a short course of dexamethasone can be given. 

He thinks dehydration was a big factor in Doug's falls; that he fainted. I agree. Drinking is something Doug can do. My job is to encourage him to drink more without nagging. 

Talking to Dr M always makes us feel better. He encouraged us to get out of the house when we can. We will visit with him again in two weeks. 

Two dear friends brought food over today. We are so blessed!

On Tuesday morning a different friend called and asked if she could bring some freshly baked peach cobbler. Sure! 

We also got fresh greens from a friend's garden. Yum.

Doug has been taking long naps in the daytime. Nothing wrong with that. 

I'm reading a good book: Something Has to Change by David Platt. 

Today a friend from church stopped by to bring us beautiful pink roses! Such a bright spot in the day. 

Today the hospice nurse came. She watched Doug walk without the walker and she thinks he is okay without it as long as he feels steady. She told me to let Doug use his judgment - she knows I tend to be over-protective! I just have to get the image of those falls out of my mind! I told her we really want to get out on these nice days. The steps going down to back patio are too many and too steep. So she watched Doug go out the front door and down the two steps without the walker. We do have a sturdy railing, thankfully. (Doug put that in several years ago with a friend's help, after I twisted my ankle.) She thought he did well. So now we can go for rides in the car! 

The nurse did caution him to use the walker if we walk to the mailbox, since the road surface is not smooth. 

Instead of weighing patients, hospice has a new way to check on weight loss. They use upper arm circumference measurement, using centimeters. Much easier than a scale! Today's number is a baseline, 23 cm. He still has an appetite and enjoys food but is eating less. His oxygen sat (saturation) today was 93%. 

We will get a nurse visit every week. 

One more bright spot today: one of the nurses from the infusion clinic at the hospital came to see us. She is such an encourager. Doug has always loved to tease her. Another of God's angels. I will say it again - we are so blessed! Of course we do have down days too, but counting our blessings is not just a corny saying - it works. 

We are trying to live in the moment, not always easy, but possible with prayer. God sends us many signs of His love. 

Today's quote:

"Our first and natural inclination in any trial is to pray for God to remove the difficulty. But God's first priority is often to strengthen us in the midst of the difficulty rather than to take us out of the difficulty. That's because He can see the treasure that lies at the end of the trial."  Gary Thomas

Doing better

Last Monday Doug started taking percocet for his back pain. He started on one pill every 4 hours but that didn't help the pain much. So the hospice nurse said to give him two pills and keep track of his pain level. After a couple days the pain lessened. But he started having some mental confusion. We are blaming that on the two percocet. So we have backed off to one percocet and he is clear headed now. I am thinking that soon he can do without the percocet - then the next goal will be to walk without the walker. He is taking a couple naps a day - that's good I think.

Friends have been bringing us food; they are much appreciated!

Today we had a very nice day. Our son Kelly and our daughter in law Jamee came up to see us. Jamee brought her famous beef burritos with green chile sauce and all the toppings. Jamee is a fantastic cook.
After we ate, Kelly and Jamee did all the kitchen clean-up. They are spoiling us.

While Doug was resting, Kelly helped me with a yard project that I had put off. Jamee and I carried rocks while Kelly figured out where to put them. I just have a little to do to finish it up. We have a tiny deck off the sliding door - I call it our deckette. It will hold one chair at an angle, so Doug will be able to sit out there if I'm working in the yard.
We have the best son and daughter in law!

So far Doug is being careful and using the walker faithfully, so I can relax a bit.

Monday we have a video chat with Dr. M, the Denver specialist. And Thursday the hospice nurse is scheduled to come. I can call her if I have a question or problem before then.

Love to all.

Verse of the day:
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."  Matt 6:34  The Message

Falling

Last Thursday we went for a drive higher up into the mountains, past Cottonwood Lake on a dirt road. Doug drove, first time in a long while. We went up until the road got too narrow and rocky and we saw more ATVs than cars. we found a place to turn around and came back home. It was fun to get out.
Friday we got the road dust off at the car wash. Good friends picked up a take-out dinner from a restaurant and delivered to us. Very kind and enjoyable!

Friday night about 10:00 Doug fell. He knows not to do this, but he bent over to turn off a floor fan before I could stop him. Next thing I know he was sprawled on the floor. He was conscious but dazed. He didn't seem hurt but he couldn't get up; couldn't get his legs under him. Best thing to do most of the time is let him stay on the floor for a few minutes. Finally I pulled a kitchen chair over to him and he slowly managed to get onto the chair. After a few more minutes on the chair, he held onto me and was able to walk to the bedroom.
I waited until 7 a.m. and called hospice to report the fall. Doug and I had a serious talk - no more bending over! We are very thankful he was not hurt. Hospice is sending us a walker.

Saturday and Sunday were nice quiet days.
Sunday night (last night) Doug fell again. It had started to rain and blow, lightning too. I woke up about midnight and Doug was sitting up on the side of the bed. I said "What are you doing?" He said he wanted to close the window. I told him to stay put and I closed the window. He had a bad fall several years ago and it was decided he has orthostatic hypotension. Fancy term for low blood pressure that can result in passing out if he gets up too fast. Pretty common in older folks. So he has learned to sit for a few minutes before he gets out of bed and stands up. That has worked well. Why he has suddenly forgotten to do that is anyone's guess.
I thought he was going to lie back down in bed. Then I heard a loud thud! When I turned on the lights, he was sitting with his butt up against the closet door. When I touched him he was cold, clammy and sweaty. So I pulled his pillow onto the floor and helped him ease into a lying down position. He said he wasn't hurting anywhere but he had a goose egg on the elbow and torn skin. Finally he was able to roll onto a rug and I used that to pull him closer to the bed. He felt much better to the touch. With my help he was able to get onto the bed. I bandaged his elbow. At 3 a.m. he woke me up and said his back was hurting and asked if I would give him some morphine sulfate - one of the drugs in the hospice kit. I wasn't sure how much to give so I called the 24/7 hospice number. One of the operators answered the phone immediately and said he would get one of the nurses to call me back.
Well - I had forgotten that I had my phone set on 'do not disturb' from 10 p.m. to 7 a.m. So the nurse's call to me didn't go through. She called our son who is listed as an emergency contact. So I reset my phone! Duh! Anyway the nurse told me it was okay to use the morphine and how much to use. She asked if we needed a nurse to come right out. I said no need for someone to come in the middle of the night. Neither of us got much sleep but Doug's pain was less.

Today he is better but the morphine makes him too drowsy. So the hospice Dr. wrote a script for a different pain med and the drug store delivered it today.

The chaplain Deb who is also a physical therapist came today. We had not met her yet. Turns out we know her mother in law who goes to our church. Deb is very kind and caring; we had a nice talk and she adjusted the walker to Doug's height. Deb loves dogs - Nikko snuggled right up to her. So far everyone we have met from hospice has impressed us. Compassionate and capable.

Doug and I have made a deal - no more getting out of bed without waking me first! I pray that his brain will wake up before his body starts to move.
We have had enough excitement for a while. We are both very tired.
Tomorrow his nurse is coming out.

Love to all.

Doing okay

Doug is doing pretty well. He has no pain, praise the Lord. He walked to the mailbox with me this morning. At a slow pace and using a cane, but it's so good that he gets outside. His appetite is good - he's eating well. I think he's feeling better with the chemo drugs washing out of his system.

Dr. Matous, the Denver specialist, is keeping up with Doug. We had a telehealth visit with him on July 6. We didn't realize he would be following up like this. He wants to check in every two weeks via video. I know part of the reason is for his own learning, since Doug is now a somewhat unusual case with the aggressive plasmacytomas. But he also really does care about his patients and does not drop them after referring to hospice, unlike some doctors. He asked how we are both doing with hospice, and how Doug is feeling. We told him having hospice is a comfort. He is a compassionate man. He wants to "see" us again on July 20.

Last Monday Doug's brother drove up from Denver. We had a good visit and went out to lunch - first time since Covid started. We sat at an outdoor table that was spaced far from the others. There was a nice breeze and we had an umbrella for shade. We had a lovely time.

Today was a good day. Our Pastor Tom called and came to see us. We always enjoy his visits. He's a dog person and the dogs are sure he comes just to see and pet them!

Doug's hospice nurse Alexis made her scheduled visit this afternoon. She said some people do so well on hospice that they graduate and come off hospice! If that happens they can go back on when needed. Alexis will come again on July 23. The dogs were so happy that two people came to see them!

We are keeping it slow and simple, looking for blessings and appreciating the cards and phone calls from friends. Most days I join Doug for our 'siestas' after lunch.

Love to all.

Today's verse:
"I will guide you along the best pathway for your life. I will advise you and watch over you." 
Psalm 32:8

Hospice

Once our local oncologist contacted hospice at our request, things started happening quickly. From my experience in the past as a hospice volunteer, I know many patients/families wait until almost the last hours to contact hospice, so I think they are used to responding quickly. We are an exception in that Dr. M advised us to meet and talk with hospice right away.

I think Dr. M wanted us to feel supported by a team who will be beside us. Ever since Doug's diagnosis in 2008, we have had strong support. First by Dr. M the Denver myeloma specialist who initiated Doug's first treatment followed by the stem cell transplant and many courses of chemo over the years. We would go to Denver once a month for years. We always felt we were in good hands by people who care. When Doug started getting frequent infusions in 2018, Dr. M referred Doug to HRRMC oncology in nearby Salida - only 30 minutes from home. Dr. M was still very much involved but the hands-on care was HRRMC oncologists, PAs and nurses. We got to know these people as our 'new team'.
Both Doug and I are really missing the weekly (or twice a week) contact with the nurses in the infusion clinic. Other than the actual infusions, Doug looked forward to seeing and laughing with the nurses. They really spoiled him with attention, and I felt so welcome too. They had an answer to every problem. A couple of the nurses have emailed us just to say hi; that means a lot.

When Doug went off treatment, we didn't have a team on our side anymore. I think that's why Dr. M encouraged us to get to know the hospice team right away.

On 6-24-20, the hospice nurse called and came over to meet us. Hospice is very much for the family as well as the patient. We liked her as soon as we met her. She has a good sense of humor (absolutely needed for this work in my opinion) and loves dogs. She also wanted to meet them! Alexis is her name and she will be Doug's regular nurse. She already knew Doug's medical history but wanted to hear it from him. After talking for a while, she excused herself to make a phone call. When she came back, she said she had called her supervisor - and that if Doug wanted to be admitted she could do it right away. She said Doug's diagnosis was "the golden ticket" to hospice. That made Doug laugh since she said it in a funny way. Guess you had to be there.
We thought about it and there doesn't seem any downside, so Doug said yes, go ahead with the paperwork. Even though Doug doesn't need hospice services now, we have a new support team again, and it's a comfort. Alexis said she will stop by every two weeks just to see if we need anything. She gave us a phone number to call if we need anything or have questions. We have Alexis' number and the office number which is answered 24/7.
 Doug's meds will now be paid for by hospice; they even arrange for the drugs to be delivered to our door.

We are going through a range of emotions, as it all seems surreal for now. Doug looks the same (cute of course) and he has no pain. He is on a new antidepressant now. I think we are both coping fairly well under the circumstances. I do feel kind of scatterbrained and sad sometimes. There is no "normal" now.

I plan to keep this blog going as long as I can and hope it can help someone else.
 Our faith in God is our anchor.

Love to all.

 Verse of the day:
"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit."  Romans 15:13