Quality of Life

My husband Steve had what we thought was his last oncology visit today. We thought his oncologist would put him on Hospice, but she suggested a couple of things, targeted at managing pain. The first is to give him IV Zometa. It’s like Fosamax and will strengthen his bones, delaying the onset of fractures due to the bone tumors. The other recommendation is to have radiation therapy to shrink the tumors and alleviate pain. She also referred Pain - enjoy the journeyhim to the Huntsman Center’s pain management team. The pain pills he takes now are not quite doing the job. So next week Steve has a consultation with the radiation center and the pain management team. Then the week after that he sees his dentist who will clear him for the Zometa infusion. He will see his oncologist again in a month and have the infusion then.  Steve doesn’t know enough about the radiation to  make a good decision at this point. If he chooses against radiation, then Hospice care will be the next step. Either way, quality of life is our goal. Steve is still using herbs, vitamins, minerals, antioxidants, and other anti-cancer therapies and feels that he still has a chance for survival. Meanwhile, just in case, he is getting his affairs in order. I know this all sounds serious, but at the same time we are positive and thankful and take every opportunity to enjoy life as it comes, no matter how much life is left.

Cinderella Again

Photo booth July 1, 2015In the spirit of looking for joy, Steve and I went to see Cinderella again. I love that movie! Have courage and be kind. Remember who you are. Accept others for who they are. Forgive. We stopped at a photo booth so we could remember our time at the movie. Fun! It was a great break and very relaxing. I just really got lost in the movie.

photo booth kiss July 1, 2015

 

 

Summer Fun

summer funYesterday 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?

Urology Update

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.

Father’s Day

Fathers Day sprinklerWe 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!

Joy

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.

Lincoln iPhoneOne example of joy is when my 2-year-old grandson Lincoln gets ahold of my iPhone and takes a zillion pictures of himself. He cracks me up.

Gone to the Moon

MarsYesterday my husband Steve was scheduled for a bone scan, to see if his bladder cancer has spread to his bones. At 10 AM he was injected with some “glow in the dark” stuff, then we had 3 hours to wait until the bone scan. We decided to go on a date. We went to the Clark Planetarium and then to lunch. We had a great time exploring other planets and holding hands and letting the world drop away. Sometimes ya just need a break. Even if you have to go to another planet.

Fed Up

candy HawaiiMy husband Steve’s diabetes specialist recommended that we watch Fed Up, a documentary on Net Flix with Katie Couric. I have known for a long time that sugar is bad for me, but this film pulled out all the stops. I took up the Fed Up Challenge to go sugar free for 10 days. I have failed miserably, mainly because there is sugar in everything! (Well, and because I have low will power).  I made a taco salad but there was sugar in the salsa and in the salad dressing. I ate a Hershey bar absentmindedly. Oops!  Tonight we had steak but there was sugar in the powdered baked potatoes (Too lazy to fix real potatoes). And my kids came home from Hawaii this afternoon and brought us candy. It had coconut in it – who could resist? My resolve to go without sugar went right out the window. I am addicted! I got a cookbook called Fat Chance and I hope that will help me to use whole foods in preparing food. The cool thing here is that it is not the best news for my husband to be diagnosed with diabetes, but we have learned a lot about good nutrition and exercise. So once again, our challenges become learning opportunities. Cool.

Social Work

Tai Chi UniformsSo much going on this week. This afternoon I actually thought today was Monday instead of Wednesday! This morning My husband Steve had his brain MRI at 7 AM. Then we went out for breakfast. Then to the diabetes clinic where he learned all about diet and exercise and  how to poke his own finger. Then to lunch and a few errands. Steve felt great all day, which is very unusual. He even mowed the lawn this afternoon, without my permission of course! When we arrived home we meditated for about a half hour. Very rejuvenating. Then I went to Tai Chi this evening. I love it. It is moving meditation. I get physical, spiritual, social and mental exercise. It’s very grounding and healing. I go to class 3 days a week and hope I can stay on schedule. It’s a lot to learn, but that’s what I’m here for. Although I posted a picture here of another student and myself holding swords, I really don’t use a sword yet.

I’m realizing that socializing with other people is very healing for me, and is a good stress reliever. I am making friends at Tai Chi and there’s just something about getting to know new people. They are so supportive and welcoming. And last night I went to Relief Society (a women’s meeting at church) and being with other women just built me up. Two of my friends walked me home and we laughed and laughed. So light-hearted and uplifting. And now we have a big plan to go see Donny Osmond in September. Can it get any better than that??

Reschedule

Update: Steve’s chemotherapy won’t happen tomorrow. It has been delayed until Thursday. His oncologist looked at him on Friday and said, “you don’t look like yourself. Let’s postpone the next round of chemotherapy.” I appreciate her using not just lab results but also her intuition to make decisions. She asked him if he was feeling up to the chemotherapy and he said yes, but later he told me he really didn’t feel ready, and was glad she postponed it. So now the plan is for him to have a brain MRI on Wednesday to follow up on the headaches he’s been having, and then chemotherapy on Thursday, followed by a referral back to the the urology surgeon to remove his bladder and prostate. I have to say when the oncologist mentioned the surgery I got a little butterfly in my stomach. The surgery has seemed so far away, and a bit unreal, but the event is now tangibly approaching. I’m not feeling great about that. Maybe that’s when I will start worrying and won’t be able to say that I don’t worry. We’ll see.

Meanwhile, life goes on. Our family had a fun Memorial Day backyard party while Steve was in the hospital. I have put in a lovely vegetable garden.  My son and his wife are going to Hawaii today. My neighbor is getting a divorce. I still can’t see very well. Life just doesn’t stand still and wait, does it?