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?
Getting ready to take my husband Steve to his oncologist this morning. He is nauseated and tired, but still committed to chemotherapy #3 on Monday. I am hoping he has a good weekend.
So many people ask about Steve, followed up with a question about how I am doing. Some say this is unfair, that I must have some bad days, and that I must be worried sick. I assure people that I am fine. Really. I don’t feel that this is unfair. Illness and trials are a part of life. I’m learning. I found a scripture last night that applies: We glory in tribulations…knowing that tribulation worketh patience; and patience, experience, and experience, hope (Romans 5:3,4). OK I’m not exactly “glorying” in this tribulation, but I am developing patience and I am learning a lot. I don’t really have bad days and I’m not worried. I am filled with hope. I appreciate people asking about me. It shows that we understand that when one family member falls ill it affects the whole family. Thanks to all.
My husband Steve was told he needed to be overnight in the hospital to treat a urinary tract infection. SIX DAYS LATER he is finally back home today. Yay! The staff, nurses and other patients all enjoyed his crazy hair hat. He is doing OK but has lots of nausea. Chemotherapy starts again next Monday. 2 down 2 to go.
While Steve was in the hospital I cleaned our bedroom, which has a history of being very messy. We have agreed to some ground rules about keeping it clean. We have been talking about this for years but we finally got around to it. It will be fun to see how long it takes to get messy again. But it’s fascinating what being in the hospital or having a serious illness can motivate us to do. What once was mundane becomes important.
Enjoy this video created by my son Brad and family for my birthday. The singers are my sons Andy (red hair) and his wife Kathryn, Brad (in the bathroom) and his wife Avery (light blond hair), Sid (hiding behind tree), my daughter Pepper (in her apartment) and her son Marlo (in the back yard). I love the song… “If I only live once, I want to live with you.”
My husband Steve is being well taken care of at the Huntsman Cancer Hospital. He is struggling to get the urinary tract infection under control. He has chills a few times a day and on Thursday night his temperature went to 107! This morning he had chills but no fever. The concern is that the infection will spread throughout his body (septicemia) so they are watching him carefully. His kidneys are not functioning at 100% so they are watching that closely. I am hoping he will come home today, since it’s my birthday and that would be a great present. Above all this he remains positive and active – when I arrived yesterday it took a long time to find him because he was walking around, dragging his two IV poles along for the ride.
It’s good to take one day at a time. Today is a good example. I took my husband Steve to the Huntsman Center for this 3rd round of chemotherapy. He has a severe Urinary Tract Infection (UTI) and was hospitalized so they could give him IV antibiotics. No chemotherapy today. It will be rescheduled for Monday. They are going to put in a more permanent IV line because today it took 4 pokes to find a good vein. Last week it took 5 pokes. Enough of that already. Steve feels pretty crummy but remains positive and says he doesn’t think this cancer will kill him. So like I said we just take one day at a time. What’s the point of worrying about the future? Worry doesn’t help. “Worry does not take away tomorrow’s troubles, it takes away today’s peace.” I found that quote on Google. Here’s another one: “Worry does not empty tomorrow of its sorrow. It empties today of its strength” (Corrie ten Boom). And: “Worrying is like a rocking chair. It gives you something to do but doesn’t get you anywhere” (Van Wilder). So let’s stay in the present moment and focus on the good stuff.
Steve is losing his hair rapidly, including his beard. His beloved handlebar mustache has been spared so far. Fortunately, he has a collection of 5 hats that have hair built in. It’s been fun because people are giving him a lot of attention when he wears a hairy hat. He wore the hat with bright orange hair to the clinic yesterday and one of the nurses thought it was his real hair. He was also asked if he’s a Denver fan, from Boise, and if he wore the hat just to match his mustache. When he wore one in Reno at a casino in the past a lady came up to him and said, “Dance with me you big hairy man.” Several women tried to run their fingers through his hair. Very entertaining.
Steve is tired lately, and nauseated. The urinary catheter was removed yesterday so he can pee on his own now. Unfortunately the urethral pain has not gone away but we expect it to get better each day. He also has a urinary tract infection but he is being treated with antibiotics. He starts his 3rd round of chemotherapy this Thursday.
“Patience is not the ability to wait but how we behave while we’re waiting” (Joyce Meyer).
I decided to plant a vegetable garden this year. Working in the yard is increasing my stamina and energy so I figure a vegetable garden will be good for my health in many ways, including my spiritual health. I hired our friend a contractor to build a fence around the garden so the dog won’t be able to eat the plants. He started the job 2 weeks ago and it’s been raining ever since. When a sunny day happens along, I choose not to plant because of the dog and the sogginess of the dirt. So once again, I need to be patient. I find myself complaining, and worrying that I will be planting too late and won’t harvest on time. Weeds are now growing in the garden. Seems like everywhere I look I am being taught about patience. The garden is like my life: I have certain expectations and they aren’t happening in a timely manner! But I choose to behave and think positively. When I see weeds coming up in the garden, I pull them. When I see weeds coming up in my life, like negative thoughts, I pull them. When I look at the garden I see the possibilities and remember how beautiful and bountiful it will be. I need to do the same thing with my life. The rain will pass and spring will come and the harvest will be wonderful.
It’s been a little over 9 months since my meningioma surgery. I saw my eye socket surgeon today. I thought he would schedule surgery to repair the area where bone is missing in my left eye socket.I wasn’t feeling very good about that and was wondering why. However, he chose to be conservative and give me 3 more months to heal. We are waiting for scar tissue to form to buffer my eye against my brain’s pulse, and it usually takes 9-12 months for that to happen. I asked why it seems worse now than it was when I saw him 3 months ago. He said scar tissue is forming, but it will seem fairly sudden when I notice the pulsing has stopped. He wants to see me the end of August to re-assess, and schedule surgery if needed. About 70% of his patients like me don’t need the surgery. This gave me a lot of hope that I will in fact heal on my own and not need surgery. It’s also giving me more practice at being patient!
I asked the eye socket surgeon if the fatigue I have could be related to my vision disturbance. He said no it was most likely related to the brain surgery, and some people take as long as 2 years to get over the fatigue. The brain takes time to recover from trauma. His words were comforting because I just figured my energy would be back to 100% by now, but I am tired all day pretty much every day. Once again, I have hope now that this will clear up on its own. And I get to be patient.
I left the surgeon’s office feeling hopeful, optimistic, and a little elated to know that healing is probably around the corner. I am planning to use positive affirmations and thoughts to help the healing process. I am reading Your Body Believes Every Word You Sayby Barbara Levine and I will use some of her techniques to promote self-healing. Plus I’ll keep praying.
We’ve been feeling lucky that my husband has not lost any hair from chemotherapy. But he took a shower this morning and lost a lot of hair down the drain. When he got out, I tugged a little on his hair and a clump came out in my hand. He said, “Don’t tug anymore.” Like that will make a difference. His hair is quite long and I suggested cutting it shorter so when it all falls out it won’t be such a shock. He’s very enmeshed with his hair; it is closely linked to his identity. So along with the nausea and fatigue, I think the hair loss will be a very big challenge for him. And I think for me too, because he won’t look like himself anymore. Chemotherapy isn’t just about physical side effects, but emotional and social side effects as well. I enjoyed cutting his hair and it looks great, but clumps continued to come out while I was cutting. I think he’ll start wearing that funny hat with the hair built in more often now. I have posted before and after pictures of him here. They reflect his hair loss and his weight loss. Enjoy!