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update from Michigan Jan


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My husband has completed six rounds of chemo and went for a scope and a scan. The original tumor site shows a marked improvment and the cancer in Jeff's liver shows a small improvment from the last set of tests. The doctor descirbed these results as "good" not excellent. He then ordered 3 more rounds of chemo for Jeff, starting next week.

Then the doc looked at us and said, you know this won't continue. Something will change, either Jeff will no longer be able to tolerate chemo or the cancer will start to grow in spite of the chemo. There is no cure for this. That statement coupled with only a slight improvment to the liver, made me think it may be coming sooner rather than later.

Here we were both doing so well and were quite happy and working on starting our business and we go to the doc and he gives us a good report then hits us in the heads with reality. I walked into that office with my chin high and came out with it on the ground. What good is it to take away all hope from a person. We were at least living happy and yes, we realize that Jeff hasn't much of a chance of getting well, but what about letting you keep some hope so living in the meantime isn't quite so hard?

My POTS symptoms which hadn't been too troublesome are now giving me a bit more trouble, having more palpitations than I would like.

I am going to see Dr. Grubb who I haven't seen in 3 years to find out if there is anything different I can be doing for my POTS, perhaps trying mestinon. I have to get my POTS under better wraps so I can handle the ups and downs of the stress of Jeff's cancer. I am also under stress from worrying about being left alone to cope. Jeff is my caregiver. I don't do grocery and a whole lot of other stuff. I don't even go outside into the yard in the summer.

Continued prayers please

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jan

I am so saddened to hear your doctor was so blunt with you and Jeff. I can NOT imagine how that must have put the weight of the world back on your shoulders. I also wonder why he felt compelled to go the brutal honesty route, if you and jeff were taking things a day at a time. That doctor just wasn't thinking. We have all heard stories where people defied the odds much longer than the doctor first prognosticated.

I hope you can help yourself with the POTS symptoms as it can be a nightmare when WE are under stress. Good luck in taking care of yourself and Jeff..

If anybody can pull a trick out of his sleeve for a situation, it is Dr. Grubb. He can at least be a reassuring voice for you to hear after that other doctor.

I send many more thoughts and prayers to you both.

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Jan,

I'm so sorry you got a bad response from the doctor. I still wouldn't give up quite yet. I had a family friend who had a stroke, and the doctors said she'd never see, or talk again. A year later she went back to work, and only shows small signs that she'd ever had a stroke at all. She said she never let the doctors tell her what she was going to do with her body. Amazing things happen all the time. Don't loose hope.

I also hope you can get the POTS under control. I'm praying for you and Jeff.

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Jan, you know that Teri and I are in your corner, and Jeff's too.

Love to you both--Nina :P

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You and Jeff are in my thoughts and prayers.

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Jan,

In my thoughts in prayers.

They say that real joy and laughter, however that's possible in such a hard situation, actually prolongs life, somehow sends good vibes that keeps the body going longer.

Doctors are often surprised by their patients' endurance.

Ariella

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Dear Jan,

I'm from Missouri, which is known as the Show-Me State. So, I never take too much stock in what someone says. Instead, I go with what is being "shown" to me. You said your husband was having good response to the chemo. Also, three more rounds WERE ORDERED. So, while the doctor may have been less than hopeful with his words, his ACTIONS indicated there is hope. Stick with that.

Best wishes to you.

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Hi Jan,

I think I may have mentioned this before, but there is an awesome, very inspiring book called Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients by Dr. Bernie Siegel.

It may give you and your husband some hope to continue fighting this disease and some methods to help strengthen his body's immune system and cancer fighting abilities.

It is about this doctor's transformation and how he helped many cancer patients accept their condition but also fight it. He has saved many lives. It's a book of hope and incredible insight into the mind/body connection.

This book is great not only for cancer patients but for anyone facing a chronic illness as well. I can't recommend it highly enough. (My grandmother gave me this book and I often read it when I'm in a POTS hole)

I am sending lots of cyber hugs to both of you. I pray that the next rounds of chemo are highly effective. It's important that his mind set be positive too and that he has faith in his physician.

Best wishes,

Gena

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Jan,

I wored at a major cancer hospital as a chaplain. I can say there are miracles. Unexplained remissions. Time granted. I think that checking other sites for their treatment , and talking about it with your doc helps. Please take time to be together. Talk always. Sometimes you (we) must become warriors. As we defend and protect ours it gives us a sense of power. While the method the doc used to give you the news was blunt, you are aware, its better to know all possibilities. I pray for you daily. Please pm me if there is anything I can do or if you need anything :) Miriam

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jan-

you both continue to be in my thoughts & prayers.

keep on keepin on...

(((HUGS)))

melissa

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Jan,

You and Jeff are in my prayers. It makes me very sad to read what ya are having to go thru but no one can say EXACTLY how things will go. Try to get that chin back up and enjoy today.

Paige

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