Portland, Oregon

Portland, Oregon

Saturday, October 15, 2016

A Little Fretting Going On

Bob does 90% of the fretting at our house but occasionally something provokes me into doing a little myself.  Currently I'm fretting about Bob's appointment this week with the hematologist.

A number of years ago Bob was referred to a hematologist because of a low platelet count. The doctor was quite sure it was Myelodysplastic Syndrome, just needed a bone marrow test to confirm it, but it did not. Now what?

A few months later Bob was not doing well so they tried again. Still did not confirm it.

Then it was off to the medical school (OHSU) to see the guru of blood disorders. His diagnosis was Idiopathicthrombocytopenia. He recommended seeing an immunologist.

We scheduled an appointment and learned Bob had Raynaud's disorder in his hands but nothing else. Nothing new to add to the search.

What is Idiopathicthrombocytopenia? It simply means they don't really know. Apparently this happens in older men more than older women and they go on living and die from something else.

Bob's hematologist chuckled at the diagnosis. I think he thought the guru was teasing. In the early days of all this, when they thought it was Myelodysplastic Syndrome, they mentioned it sometimes went into leukemia.

The Internet says Idiopathicthrombocytopenia does not lead to leukemia.

I'm nervous, perhaps I have no reason to be, but I am.

I suppose every person facing the mortality of a spouse thinks "I wonder who I am? I know who I am shaped by 54 years of living with Bob but who will I be when that influence is gone?"

I said to Susan this morning "I wonder how many decisions I make in a day are influenced by how I think Dad will react," and she said "A lot."

I said "Someday I will have cut flowers in my house and burn candles." She said "And I will buy them for you."

15 comments:

  1. Susan is one sweet daughter. I think it is natural to think about your future when faced with the mortality of your spouse.

    I hope you get some answers next week. Many of us (including me) have this need to know and to understand when there are physical changes in our health that don't make sense. I think it helps us to process and move forward . Take care Linda, and keep us posted on how things go.

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    1. I hope I'm overreacting. I handle heart related issues much better than anything else. The unknown is usually worse than knowing.

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  2. I never thought about what my life would be like without my husband until after I lost him. I'm glad I didn't because there are enough things that I'd do that would make me feel guilty that he was no longer there to enjoy.

    It's so much easier when we understand what is going on when it comes to medical stuff. I hope you gets some answers.

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    1. I've thought about the financial side of being widowed but never before thought about me as a person. We'll hope for the best and see what happens.

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  3. We forget - or never realize how much of our identity is wrapped in being part of a pair.

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    1. For the first time it hit me today. I thought about me as a person. Will I want to continue life as it is now or will I want to make changes?

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  4. Your Susan is a peach.

    Well, doesn't Idiopathicthrombocytopenia roll trippingly off the tongue? Idiopathic always means they don't know what caused it. I have an eye disease called idiopathic juxtafoveal retinal telangiectasia. That's a mouthful, too.

    I completely get why you think about life without your husband. I do the same, and since I have more health issues, I also think about how he will fare without me. It's a scary thought. It's so important to have a support system, someone on whom you can count.

    I hope Bob's news from the doctor is something that can be dealt with easily. Fingers crossed.

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    1. We all deal with the loss of a spouse in different ways. A suspect a lot depends on the relationship you had with your spouse, and we all handle grief in our own way. Hopefully we'll be able to kick that can down the road a piece when we see the doctor this week.

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  5. Oh, this post leaves me sad. I know we will all face this eventually, either as the spouse that lives on or as the one departing.
    I will have cut flowers and candles now, while I can.

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    1. we do a lot of things simply to appease Bob's anxieties and his OCD. No flowere to drop pearls and no burning candles are two such things. It may take me a while to realize I don't have to do that anymore.

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  6. The situation you are in is a steady roller coaster. Before one issue is settled another one comes along. too many times our medical system doesn't explain things adequately and it just creates more confusion.

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  7. It is so true. Mike had very strong opinions. Eventually, I found myself making many little changes. At some point my grandson was visiting and he looked around and said, "Grandma, you have really girled this place up!" (No candles though)

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  8. You know, you will be just fine, and yes, you will find joys in life that you aren't able to experience now. I promise. :)

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  9. Even if you have pretty much managed everything yourself, or think you know about all needs, my experience after my husband died was that all sorts of little things came up that I discovered I didn't know as much about as I thought I did. There wasn't anything I couldn't handle, but it was an interesting discovery.

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  10. You have every right to be afraid. All this medicine mess is so hard on a person. Just remember worrying doesn't fix anything while it using the strength you need to get through the future. My fingers are crossed for you guys. I playing catch up on all your posts.

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