I am still going to Tai Chi 3 times a week. We do more than the movement; we do a lot of meditation and philosophy. On Saturday we worked with swords and sticks. I had a stick and it felt very awkward doing my regular moves but holding a stick in my hand. I noticed it was hard for me to remember my moves because the stick distracted me so much. The instructor said I should try to make the stick a part of my movement, not treat it like an outside object. She pointed out that the stick could represent challenges in our lives. We are moving along nicely but then the stick appears to distract us.We will move forward better if we embrace the challenge and become one with it, and have it be a helper instead of a hindrance. Right away I thought about my brain surgery and Steve’s cancer and how we’ve been so distracted by them. Our lives have certainly changed. From Tai Chi I learned that fighting the challenges and treating them like unwelcome guests is not in our best interest. To move forward in life, I can embrace these challenges and consider them a part of my life now. They are certainly a part of my life story.They can be a help instead of a hindrance. It’s up to me.
Steve is continuing to do very well. Yesterday he went to a football game and out to dinner. Today he went to church. He is walking better and managing the pain with Tylenol. So far so good.
Steve continues to do better than usual. He finally got out of the house this week. Once for a church picnic and then today for an acupuncture treatment. I especially loved the acupuncture session because they have 2 beds in the treatment room. I laid down on one and meditated while Steve got needled. It was great!
On Monday we went to the pain management clinic and met with a truly holistic nurse. She was kind and caring, and a great listener. During the course of our time with her she asked us about mind, body, and spirit. She was not judgmental, very accepting of all of Steve’s responses. It was a wonderful experience. On top of it, she took him off of the opioids and switched him to Tylenol for bone pain. And it works!
We have lots of company lately. About 3 or 4 times a week someone drops in and we have a lovely time visiting. It really means a lot to us, feeling loved by our friends. It’s nice to reminisce and laugh and just be together.
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.
We had a wonderful week with Steve’s sister, brother-in-law and mother visiting from Oregon. We joked a lot about how they were spending their vacation staring at Steve. Since he can’t do much, they visited him in the bedroom several hours a day. Not exactly a vacation, but it was nice to spend this quality time with them. Parting was difficult.
Steve’s pain has not lessened since radiation therapy but we are hoping it will improve this week or next week as the tumors succumb to the X-rays. He spends most of the time in bed reading, watching a little TV, working on his computer in his office, and receiving visitors. We tried an experiment last night. I slept in another bed so my tossing and turning would not cause him pain, and so he had more room to position himself with the least amount of pain. I slept like a baby. He stayed up late watching TV. We will try the experiment again tonight.
Our son Andy defended his Master’s thesis at Brigham Young University yesterday. His presentation was at 7:00 AM!! Yuk! My husband Steve had serious diarrhea (caused by the radiation therapy) the day before and we were pretty sure he would not be able to come. At 5:50 AM he decided that he could make it. The drive was about an hour and we were 12 minutes late but Andy’s committee waited for us. Andy did a great job and Steve was absolutely delighted to be there. We went to breakfast afterwards and Steve really did well. It meant a lot to Andy that he was there. Since Andy won’t be coming back from Atlanta for graduation, his wife gave him a Hawaiian Graduation Lei in honor of his finishing his Master’s Degree in Technology. We are so proud of him.
People have said that after Steve’s passing the first year will be difficult because each event will be the first time we will be without him. At each family or community event we attend now I wonder if this is the last time Steve will be there, or the last time he will see people who are there. So the last year before passing and the first year after passing have similar challenges. One of Steve’s sisters is visiting from Oregon, along with his mom. It is wonderful to have them here and we are enjoying each present moment.
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!
For the last few days our son Sid has accompanied us to radiation therapy for my husband Steve. I really love that he drives, and holds doors open so I can get the wheelchair through. It has made the trip so much easier and I appreciate him taking time out of his busy schedule. After radiation each day we have gone out to breakfast and enjoyed some lovely father-son, mother-son time. The health center has a little cafe and it is nice to eat there, although one day we went to the Original Pancake House and ate like crazy. Right now Sid is helping Steve clean up his office. This means so much to me, as it’s been a project that is long overdue. Sid has really stepped up to the plate, along with our other children who are always so very willing to come to bat for us. We are blessed.