Yesterday I spent time organizing my calendar for July and August. We are heading for some fun and busy-ness. Today I have an appointment with a wonderful social worker. I have chosen to see her so I can talk honestly and openly about my feelings to a third party. That feels good. Then on Thursday Steve will see his oncologist. If at that appointment he chooses out of any therapies she may offer, then she will probably refer him to hospice care. Then the 4th of July weekend with family. A few days later my high school buddy from California will be visiting. She and her husband will go see Smokey Robinson with us in Park City. When they leave Steve and I will go to the Utah Shakespeare Festival. We’ve lived here for 30 years but have never gone to the Shakespeare Festival. Fun! It’s about a 4-hour drive but I think we can handle it. Then after that Steve’s family will be visiting for the rest of the month and into August. During all this Steve is selling his business and I am going to Tai Chi class 3 days a week. I’d also like to plan a family retreat. So life just moves on. I hope Steve feels up to participating. He has been tired lately, and has had some challenges controlling his pain. He is busy reading and studying about alternative cancer treatments. My vision has still not improved so I will probably have surgery in September. We’ll see. Get it? We’ll see?
My husband Steve and I went to the urologist yesterday to see if he could control Steve’s urinary pain better, and maybe figure out what was causing. His opinion is that it is bladder pain caused by the tumors and stent removal, which is causing soreness and bladder spasms. So he put Steve on stronger pain pills. Steve’s bladder/prostate removal surgery has been cancelled since the cancer has spread to his bones, there is not much for the urologist to do. So he brought up the subject of Hospice care. I never know when my tears are going to drop, and the mention of Hospice brought them out. It hit home to me that Steve’s condition is terminal, he may die from this. I don’t think I have been able to face this head on. On top of which, Steve is not convinced he will die from this cancer, so we’re still relying on faith and hope to get him through. He will see his oncologist next Thursday, and if he decides to decline any treatment, then Hospice is the next step. It seems like a big decision but from what I’ve heard, people in Hospice live longer and healthier than people who refuse Hospice. So I’m all for it. But it really depends on what Steve wants to do.
Meanwhile, we are focusing on joy and building memories. Last night we had a meeting with people interested in buying Awesome Pest Control. It would be great to get that going so Steve can step down as the owner and spend more time relaxing and reading and perhaps traveling, or doing what he wants. Today we are going to a movie, The Cokeville Miracle. Then tomorrow we’ll go to a meeting of the International Association for Near Death Studies where a survivor from Cokeville will speak. That should be interesting. I think it’s about angels watching over us. This morning I took my grandson out to brunch. Very nice. Next week I will go see a clinical social worker so I can talk to a third party about what’s going on, and how I can best support Steve and the rest of our family but also be sure to take care of myself.
I learned a great lesson at Tai Chi class yesterday. Before class my husband Steve and I went hiking with one of our sons and a couple of grandchildren, as part of our goal to create memories and focus on joy. So I was pretty tired in Tai Chi class but forged ahead. For the last 10 minutes our instructor said we should “be like water” as we did the form. Flowing. Cooling. Smooth. So I started doing the form and focusing on water reminded me of when I played in the sprinklers with my grandkids the other day. A peaceful feeling of pure joy took over. I got a smile on my face, and although I was exhausted, it didn’t bother me. I was joyful. The lesson I learned is that sometimes when things seem boring, bothersome, sad, hopeless, etc. I can lean on previous memories of joy. That makes a difference. And joyful memories are energizing. So I am glad Steve and I are looking to make joyful memories, to keep us fueled for what could be a rocky road ahead as he travels his journey through cancer. I am sharing the following poem by my favorite poet. Thanks Jen! I love the last line: Joyous, free, and wild. That’s our goal.
The moment on the diving board
Before making a splash
Opening the clothes dryer
And finding extra cash-
Doing yoga with the dog
Dancing with a child
An honoring of spirit
Joyous, free, and wild~
Phoenix, AZ 5-30-14
Tomorrow Steve will see his urologist to see if his urinary bleeding and pain can be controlled. He’s been tired lately but is following his alternative therapy protocols (aloe vera, antioxidants, meditation…) with a positive attitude. We are looking forward to visits from out-of-state friends and family next month. Smokey Robinson concert on July 11 – wahoo – always nice to have something to look forward to.
We are making memories. On Father’s Day I played in the sprinklers with my grandson. At one point he put his foot over the sprinkler and told Grandpa it was broken and could he please fix it. When Grandpa got real close, my grandson removed his foot and got Grandpa nice and wet. Very fun. My son got Steve a taser for Father’s Day. Believe it or not, each of my children and a grandson took a taser hit just see what it was like. Now that’s a memory! We also played croquet and badminton in the backyard and I realized that memories don’t have to be big trips, they can happen in the backyard. When loved ones are gathered, memories happen. We had a relaxing and joyful day. And Steve got 2 new hairy hats to wear!
As you could tell from my previous blog my husband and I are planning to focus on what brings joy to our lives. This is more challenging than I thought it would be. I have been plagued with nausea the last few days (well, the last month actually) and it is tricky to focus on joy when I feel like throwing up! So planning a trip or joyous adventure is going to take some commitment. I have seen my family physician and am doing some treatment for the nausea so I have hope to feel better soon.
When asked how I’m doing emotionally I told my physician that I was really fine but I wish I could cry more to get the sadness out and expressed. Then this morning I went to Tai Chi and the instructor asked, just as part of small talk, if I was having a good summer. I just stared at her thinking I wanted to say, no I am having a terrible summer. My husband is dying and I can’t see straight and I am nauseated and tired all the time. What I said was, “I’m gardening this summer and it’s like a sanctuary.” Her simple question pushed my sadness button. I was very sad for the first half of the Tai Chi session and struggled to pull myself into the present moment and focus on the movements. But really, I don’t want to stuff my feelings, so I went ahead and embraced the sadness and did the movements. In the end it felt good and right to feel the sadness. It didn’t mean I am not focusing on joy. This experience is inclusive of mind, body, and spirit, including emotions. I joyfully embrace all aspects of this adventure called life.
Last week my husband Steve had an MRI to confirm the bone scan results that the bladder cancer has spread to his pelvic bones. Results confirmed. He also probably has very small tumors in his lungs. The oncologist suggested 4 more rounds of chemotherapy to prolong life. She said statistics showed that with chemotherapy Steve would probably live over a year. Without chemotherapy he would probably live less than a year. Steve chose to stop chemotherapy and use the natural remedies he has, and focus on healing. What he has read about cancer says the immune system can kill it. Since chemotherapy lowers immunity, it seems counterproductive at this point.I support his decision. So now things have changed for us. Instead of going to physicians’ offices and chemotherapy all the time, his next oncology appointment is in 2 weeks. So what do we do with this extra time? With the suggestion of Peggy Burkhardt (immediate past president of AHNA) we are going to focus on what brings us joy. It can be small things, like the garden or a funny joke, or large things like vacations. Interestingly, we both agree that cleaning the house will bring us joy. Maybe not the act of cleaning, but once it’s clean, it will be joyful. So now I think it is time to create choice memories, which will always be with us. We should have been doing this all along. Stay tuned.
While spending time with a couple of girlfriends yesterday, one of them looked at the other and said, “I just have to tell you that my daughter was thinking of you the other day. When she wondered what to do when a couple of girls were fighting at girls camp, she said to herself, ‘What would Carla (name changed) do?’ Your example really made a difference to my daughter and she did what she thought you would do to intervene in the fighting.”
At this point Carla began to cry. She shared with us that in church that morning she was praying and asked God if she had made a difference in someone’s life. She really wanted to know if her life was important and if she helped other people at all. So hearing about her friend’s daughter was a direct answer to prayer, and it touched her deeply. Isn’t that awesome? We just can’t call this a coincidence. God listens to us and sends messages. We are blessed. When I think my prayers are not being answered it’s because I’m not paying attention. Life is good.
I’m attaching a couple of pictures. One is of my grandson at his second birthday. This is an answer to my prayers for blessings upon my family. The other is a picture of my husband and our daughter-in-law, answering my prayer for my husband to feel well and feel loved.
I have blogged about how a health challenge is a lesson in patience because there is so much waiting – for test results, for appointments, for symptoms to get better, etc. Well, it’s also a lesson in weighting – I have gained about 15 pounds since surgery. It doesn’t sound like a lot, but most of my clothes don’t fit and I don’t want to buy new ones. I eat for comfort, and until recently I wasn’t picky about what I was eating. Now that my husband has been diagnosed diabetic, I am taking my diet more seriously. I ran across the Gabriel Method, founded by a man who lost hundreds of pounds by meditating! So I listen, for free, to his meditations every day. It’s a 21-day program and I think it will work to get me less addicted to sugar and poor nutrition and get me back to healthy eating. I am at risk for diabetes myself because my dad had it, so I really need to get serious about nutrition. The wonderful side effect of this is that after I listen to the Gabriel Method’s recording, I meditate on my own. I used to meditate for an hour every day and I am approaching that again. It is really marvelous and health promoting. I am more grounded and confident and actually am more productive when I meditate regularly. I spend some of the meditation time visualizing healing for both my husband and myself and I feel like I am DOING something now to make a difference. Mediation seems to give me a sense of control and power in this sometimes out of control situation.
When I first met my son’s future wife, it was springtime and she gave me a Lilly, which I planted in my front yard. Last year when she was anxious to get pregnant, I pointed out that the Lilly now had 2 flowers and a bud, representing mom, dad, and new baby. She announced her pregnancy soon after that. This year she is pregnant again and the Lilly has 2 flowers and 2 buds, representing mom, dad, and their 2 kids. Isn’t this fun? We can find symbolism and metaphor all around us, enriching life and adding a smile.
This is a week of tests. On Monday my husband Steve had a bone scan, on Tuesday he had a chest CT, and yesterday we heard the results, which tested us both. His bone scan looks like he has cancer in his pelvic bones and his CT scan may indicate cancer in his lungs. We were so surprised. Shocked really. I thought both tests would be clear. We visited his urologist who removed the stents from his kidneys (ureters) and put him on a new antibiotic. So now we are waiting for his urinary tract infection to clear up, and waiting until next Friday for an MRI to confirm (or not) the bone cancer. We will see his oncologist tomorrow to discuss options. At this point the plan is to resume chemotherapy, 4 more rounds. After that we will talk to the urologist again about removing the bladder and prostate. Meanwhile we wait…
After the doctor’s appointment yesterday we went out to dinner. It was just so pleasant to do something that had nothing to do with cancer, but had a lot to do with health and wellbeing. There’s just nothing like a relaxing, cozy date to improve our outlook and just make us feel better.
I also cut his remaining hair yesterday. I have always been attracted to bald men.