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Myeloma Caregiver Wife Blog: Examining the Future

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kimmclaughlin_app.jpgNobody can really guarantee the future. The best we can do is size up the chances, calculate the risks involved, estimate our ability to deal with them and make our plans with confidence.
- Henry Ford II
 
It was last August, and I knew that bad news was on its way. Since Alan had been wanting a trip along the Oregon coast, we thought this would be a good time. It was before the bad news was delivered, so we could play without having heard it yet. 

We escaped the heat of Portland, stayed in the "Steinbeck Room" at the Sylvia Beach Hotel in Newport, where every room is dedicated to an author and decorated accordingly. Our room had shelves of botany samples in jars a la "Cannery Row" and a mural of the truck from "Grapes of Wrath" with the headlights doubling as reading lights for the bed.

I skim-read "East of Eden" for the racy parts, bought salt-water taffy (did you know they make a chipotle flavor?) then we spent the next night in a Bed and Breakfast in Florence recommended by one of Alan's oncology nurses.

But my vivid memory is of what happened at Waldport. This was the day of their modest Farmer's Market, and among the usual vendors of fruit, soap, earrings, and cookies, was an empty booth sporting primitive wooden heads and a sign "Palm Readings $5."
     
I was intrigued, so we waited for the reader to return. Her name was "Steel," a tan, strong woman with intense blue eyes. She told me that her readings were a combination of what she saw in the hand and intuition. She looked at my hand with a magnifying glass as she told the meanings of the lines in my palm, and the lines I was apparently missing. She said, "Something happened about five years ago that changed the direction of your life permanently."

She took a lot of time with me. When she was done, she asked if her reading felt accurate, and I told her "My husband has cancer, and things aren't going well."

She asked Alan if she could read his palm for free--as a gift.
 
Alan said "Yes," with a little coaxing, and she talked to him about his spiritual journey, and embracing what comes to him rather than chasing after growth. 
 
From the time we left Steel and the market until we returned home, most of our conversations were about what she had said. We pulled the car over to a viewpoint at the ocean and talked about some of the things that had gotten too scary to talk about... Memorial services, wills, computer passwords, financial skills (or lack of them), advance directives. 

We each felt our 'readings' had been made by an insightful woman who had given us a prism for looking at what we both knew, but hadn't been able to talk about until now.

When we returned to Portland for Alan's appointment, Dr. M told us that the SPEP, the bad numbers, had gone up. I had known this would happen because treatment had been postponed much of the previous month, in order to give Alan's blood counts a chance to recover. Alan was weak and couldn't walk without his cane and my arm. Everything but the Dex had been stopped.

Dr. M is also a person who guides using a combination of what he sees and intuition of how best to share it. I noticed that the last thing Dr. M said at a clinic appointment was usually a quiet hint about something he expected to become worse. At one point, I mentioned to him that I'd noticed this, and he started making the 'quiet warnings' the second-to-the-last thing he said to us. His is a gentle way of sharing difficult information and it worked well for us.
   
I hope each of you is fortunate in the guides who are looking at your future. 
zoltar.jpg























(The photo is of Zoltar, in front of an Ice Cream Parlor in Florence, Oregon)

9 Comments

Kim, I really appreciate your willingness to share such a special moment. My husband has only been diagnosed with MM since Jan of this year. He has a very aggressive form of MM that has been pretty resistant to the chemo treatments. We still need to have "the talk" that you and Alan recently had. I'm hoping that an opportunity will present itself just as yours did.

Thanks so much.

Kim,
You always make me feel as if I am not alone in some of the things I think. I thank you so much for this and hope you feel some comfort too.

Thanks for a sensitive and helpful blog entry. I appreciate how an insightful stranger helped you and Alan get to a deeper and necessary level to deal with undesired possibilities. The oncology doc whom I was referred to gave Ken and me a choice on our first appointment. "You likely have myeloma, but a firm diagnosis needs a bone marrow biopsy," she said. "That's what this appointment was for. You also likely have questions and concerns. So if you want to postpone the biopsy a day or two and just talk, we can do that." I have trusted her as a guide ever since.

Thank you once again for sharing your journey with us. Everything seems to come alive when you write your story. I can even picture the tanned lady with piercing blue eyes holding your hands for a reading.

Your blog made me check out the Sylvia Beach Hotel in Portland. Beautiful... I would love to visit Portland one day.

what a touching remembrance of a special time. "embracing what comes instead of chasing after growth" -- thank you for sharing those words.

Kim, thank you so much for sharing your journey. Examining the future and trying to imagine ourselves there without our partners is something I think most caregivers do. An analogy might be planning a trip. �Where am I going? �What should I take & what needs to be left behind. �Do I have everything I think I will need & what might that be? �Are there things I need to do to prepare for my journey alone?

Examining ourselves. So much to ponder. � The inevitable - unless of course something happens to the caregiver. � Can I go on, how can I go on? �What kind of changes will I need to make? �How can I plan for the future? �Should I even try to plan for a life alone or just deal with it as it comes? �Shouldn't there be a simple "Stop, �Drop, & Roll". Fears to face; knowing that "courage is not the absence of fear". I appreciate the quote you included by Henry Ford - make our plans with confidence sure sounds promising if we can pull It off.

Thank you Kim. Hugs, Dianne

Kim,
Very interesting blog. I think certain things are very difficult for some to talk about. It sounds like a beautiful trip to discover the soul.
Kath

Thanks,Kim,for a very insightful and gentle reminder that we are all on a journey and we might want to look for helpful guides along the way and not forget to celebrate when we can. Made me want to stay at the Sylvia Beach Hotel again; love that place. We stayed in the Herman Melville room, looking for that illusive white whale.
Healing hugs, Rhonda

Beautifully written as usual Kim. My daughter Kate and I stayed in the Dr Seuss room at the Sylvia Beach Hotel and slept on Cat in the Hat sheets. I read the guest book with comments from previous tenants and was struck by a poignant comment from one man who was mourning the loss of a relationship with his family since his divorce.

You made me think about how powerful and important a caring spouse is, and how that can be a solid foundation in difficult and uncertain times. Zoltar may not have the answer to everything, but I think love and caring can go a long way in helping face the future, whatever it may hold.

Warm regards
Sue

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