My husband Steve has been having a lot of pain and nausea and drowsiness. We bought tickets to see The Martian yesterday and it looked like he wouldn’t make it. But he rallied at the last minute and went for it. There was a lot to learn in the movie, like how we can solve any problem if we just have faith and patience. And the importance of relationships, and never giving up. And how we can do hard things. It was nice to get out and change the scenery for us, and just escape into the plot for a few hours. And this is hard to say, but the tagline of the movie, BRING HIM HOME speaks to me. I hope that Steve is brought home to Heavenly Father without too much suffering. He is a good man and I sure hate to see him like this. (In the picture: Our son Brad and his wife Avery, our grandson Marlo on the right, and Steve on the left).
Steve will start radiation this week on his penis and cervical spine, to help with the pain. We can do hard things.
I’ve been watching the General Conference of the Church of Jesus Christ of Latter-day Saints. Although it’s fun to see a friend of mine sing in the Mormon Tabernacle Choir, I have cried throughout the songs and the talks. It feels good to cry. I need the release. They were tears of sadness but also of joy. I cried when they talked about the importance of mothers, and about how Jesus is watching over all of us. I cried when the choir sang. I cried when one of the speakers talked about when his mom died and his dad had an experience that convinced him that she was greeted in the next life by people who loved her. That was comforting. I know Steve will be greeted by his Dad and Grandparents and other loved ones when he transitions and that gives me peace and joy. But I’m still crying.
Steve is still doing very well. He is tired and has some pain, but he can walk without the walker and we went out to dinner and a movie a couple of times last week. It’s nice to take a break from the downhill spiral and just do a holding pattern.
I was pruning roses with my grandson yesterday and he said to me, “My mommy is a girl and you are a grandma.” I told him that’s right. Then he asked, “Are you going to get new skin?” I said, “No. My skin is old and wrinkly, huh?” He said yes. At that moment I remembered that life is about so much more than appearances. Getting used to wrinkly skin is easy compared to getting used to all the lessons to learn in this life. It’s quite an adventure! Although I wouldn’t mind some new skin….
In Tai Chi class we practiced the form outside in the park. My instructor talked about doing the form against the resistance of the wind. I thought the wind could not knock me over, but then it almost did! A couple of times! He told me to look at the trees and see how they bow in the wind towards their tops but they remain steady in their trunks. I guess life is like that. We get buffeted by the winds of challenge and change and adversity but if we remain steady and grounded we will be OK. The question is what steadies and grounds us? For me it is my faith, friends and family. My husband is talking a lot lately about relationships. He says life is all about relationships. I agree. So I would say my relationship with the Savior, my friends, and my family sustains me. The wind actually feels good. It clears things up.
My husband Steve actually seems to be better lately! His pain is decreased to the point that he rarely takes pain medicine. His nausea has gone away. He has felt better for a few days now and it’s great. We think it’s the radiation kicking in, or a cancer remission. He is feeling frustrated however because he still cannot walk without his walker, and gets bored with not much to do all day. Last night we went to see a movie, Ant Man, and he did great. He had pain adjusting to the theater seat but enjoyed the movie and getting out of the house. Monday we will go to the pain management clinic, although he may not need it.
My eye socket surgeon wants to continue to wait for my pulsing eyesight to heal itself. Honestly I was quite disappointed when he said to come back and see him in December. I am beginning to think that I actually WANT to the surgery. Anything to get my vision back. After about an hour of feeling like crying I decided to focus (with my good eye, I guess) on what I have, not on what I don’t have. That made a big difference. If I have pulsing vision for the rest of my life, at least I’m not blind and I can at least work part time. And at least I don’t have a tumor in my head anymore. And I have a wonderful family and great friends and I can do this. Life is good. And pulsing.
Today was my first official day as a part-time associate professor at the University of Utah College of Nursing. I spent the day at Faculty Retreat learning more about the college. I worked there 15 years ago and it is great to be back. The staff and faculty were so welcoming and friendly! I can’t wait to meet the students. I was concerned about the fatigue I have been experiencing, but I feel great and have not been fatigued for about 3 days now. Yahoo! Tomorrow I will see my eye socket surgeon. I feel very hopeful that he will be able to repair my vision. So along with the vision repair and decreased fatigue, perhaps I will get back to “normal” again soon. Wouldn’t that be great? Of course, I am still subject to some emotional fatigue. So I continue to meditate daily and attend Tai Chi class.
I left Steve home today with our grandson and when I returned home Steve said he hadn’t eaten all day. Seriously?? Our grandson offered him lots of opportunities to eat but he just didn’t do it. So we had a serious conversation about the importance of calories right now and I hope he does better tomorrow. I of course don’t want to treat him like a patient, but no food all day? Come on!! Other than that, today was a pretty good day for him.
My husband Steve and I had tickets to see Kristin Chenoweth at the Deer Valley Resort in Park City Saturday night. I called the venue to get some tickets in the Disabled section but they were sold out. Since it is on a hillside we decided that it would be too difficult for Steve to go. And it would have been very difficult for him to make it to the restroom when needed. So I took my daughter-in-law instead. We spread our blanket on the lawn and ate a huge delicious dinner. Pulled pork sandwiches and nachos.I had moments of sadness because I missed Steve. Just a few weeks ago we were at Deer Valley to see Smokey Robinson and he did fine. He was walking without assistance then. Things have changed rapidly. He would have loved Kristin Chenoweth. Then I finally owned it and had a great time. It was such a nice break, and I acknowledge that I need to take care of myself so I can take better care of Steve. Thanks to my daughter-in-law who is just plain fun to be with.
Yesterday was the day I have not been looking forward to. Since our insurance company only covers 6 months of Hospice Care, we were motivated to ask Steve’s oncologist her opinion on how long he has to live. We know it’s only an opinion and nobody really knows when death will come, but she estimates 6 months. I thought I was prepared to hear that, but it is a struggle to cope with. I cry more frequently now. Before this, the whole thing didn’t seem exactly real. But putting a number to it makes me see that Steve may in fact pass away. He is still hoping for a miracle. I am still hoping that he will go quickly.
For an update, Steve is experiencing lots of pain in his left hip, related to a tumor there. He can only walk, very slowly, with a walker, and getting up an down stairs is very difficult. He received an infusion of Zometa yesterday to strengthen his bones in hopes of delaying a fracture. He also has one more radiation treatment to go. We hope the combination of Zometa and radiation will result in decreased pain. He is up and working in his home office today, on Awesome Pest Control stuff. We hope to have the business sold this week.
I am starting a new part-time job on August 17th. I will be an Associate Professor of Nursing at the University of Utah College of Nursing. I worked there about 15 years ago and am thrilled to be back. I will be teaching Community Health Nursing clinicals and Health Promotion. Those who hired me know about Steve’s diagnosis and were still willing to take me on, which I appreciate. It will be a challenge to leave him a few days a week, but we have plenty of family and friends to take care of him. It was a difficult decision to take the job but I am confident all will work out.
After radiation therapy each day, my husband Steve grabs free cookies to take home to our daughter-in-law Avery. Here are her comments:
For as long as I can remember I have always been a fan of somehow sneaking, bartering, sweet talking and then somehow getting my father-in-law to give me some of his goodies…whether it be macadamia nut cookies, cookies and cream ice cream but my now favorite Lorna Doones!
Ever since he has started going to the hospital visits for chemo, check ups and now radiation he has remembered to bring me back a package of this perfect melt in your mouth deliciousness! I am not a fan of the circumstances of which he has been able to score freebies for his favorite daughter-in-law!
But he will never know how much these mean to me. Every time he hands me the yellow package I get teary eyed and just think how could someone going through so much remember to get his daughter-in-law her favorite cookies! Now because of him they are my favorite and a memory that I will and can’t ever forget!
I love you dad!
Now this is funny. Our son Brad went with me to buy and set up a TV for the bedroom so Steve and I can be entertained on days he is confined to the bedroom. So we watched Penguins of Madagascar. At the end, Steve listened to the music as the credits rolled FOREVER. I wanted to sleep. We had a little tiff about it. He said, “You’re the one who wanted the TV.” And I said, “You’re the one who didn’t want it so why are you playing it so loud and long?” He said, “Why are you being so mean?” Then I said, “Why are YOU being so mean?” So as usual we are arguing over the TV just like always. I’m glad we got it. Thanks to all of you who recommended it. It feels like things are back to normal. Or at least close to normal.
The garden is flourishing abundantly. Yesterday my daughter-in-law picked 57 cucumbers! And the tomatoes are plump, green and numerous. I fear they will all turn red on the same day. Growth is a wonderful, inspiring thing to watch.
Steve’s radiation therapy is going well and it appears to have lessened his bladder pain. He still has great difficulty with walking because bearing weight on his left leg causes a lot of pain. We are hoping the radiation will help with that. He will finish radiation on Monday, so he has 4 days to go. We will see his oncologist on Friday. Sadly, in order to plan hospice care, we will have to ask her how long she thinks Steve will live. I know nobody can really answer that question. But our insurance only pays for 6 months of Hospice so we need a ball park estimate. As I write these words they seem a bit harsh but that’s how it is right now. He doesn’t really need Hospice yet. He took a shower this morning and is able to care for himself most of the time. On the other hand, it would just be nice to switch to home care and stop making so many trips to physicians.
Steve’s sister and husband visited today and are on their way back to Oregon now. I wish they lived closer. it was great seeing all of them.
To follow up about whether or not to get a TV for our bedroom, many of you suggested that we go ahead and get it. At this point in time Steve is not in favor of it. We’ll see…
For almost 39 years now my husband Steve and I have been watching TV every night together. I hate to admit I watch that much, but I do. From Charlie’s Angels to Poldark on Masterpiece and tons of shows in between, we have enjoyed our time in front of the boob tube together. Steve has a lot of pain now when he walks so he spends his time in the bedroom, so he doesn’t have to go up and down the stairs. Well, there’s no TV in the bedroom. It is evening now and he’s reading. Since I don’t read very easily, I’m not sure what to do (so I am blogging). At least we’re together, but I’m mostly just staring at him and meditating. This is a challenge we’ll figure out. I’ve always wanted to kick the TV habit. TV isn’t exactly good for the soul. But I am not completely opposed to buying a new TV for the bedroom!