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It gets worse, need encouragement


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thought I posted this yesterday...

but...we went to see the Pulmonary Dr. who shared the results of the bone scan (can you believe our insurance denied the Pet Scan) Remember Cat Scan revealed mass and suspicious areas both lungs, enlarged lymph nodes medisternum area, and adrenal gland suspicion. Bone scan showed spot in vertibrae T-10, I believe and several suspicious areas in the ribs....

Jim is 62 and up til that time the picture of health except for his coronary artery disease which has been managed with diet, meds and exercise for 16 years.....

We are having a needle biopsy of the spot in the spine today and have an appointment at Yale tomorrow.. morning....

Hoping I will get some information and encouragement or things to look for here....the pathology report should come monday or tuesday....

Oh, and our lovely daughter is getting married oct. 10th, it is a wedding we have all been planning for a year. We so want him to be able to walk her down the aisle.....

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I hope you get the encouragement you need from the many survivors here. Just a note about the wedding-- when John was in the middle of chemo we had a wedding that we really wanted to attend. We told the doctor that we needed that day to be a "good day" so we could go. They arranged the treatment so that he would feel up to going. For John, about the 3rd day following chemo he was down for several days. I think they gave him a shot to boost his blood cell count and changed his chemo day so he would feel well enough.

Let us know how things go.


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This is so very scary for you and your family Linda. You know it is bad but you are not sure about what can be done. So many of us have been there. As Ry says though there are many survivors here to take inspiration and hope from. I hope your appointment tomorrow goes well and that a treatment plan starts to fall in place. Positive thoughts and prayers for you, your husband and family.


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My sister had a similar story to Ry. Our cousin and his partner were getting married in Ontario while Kelly was taking chemo. We told the oncologist's staff and the nurse told her essentially that cancer should NEVER run your life. :) So they would be sure that she made it to her cousin's wedding, and she did! A month later our niece was married and they did the same, gave her some neupogen and held chemo that week because of her WBCs, but she was at our niece's wedding. So once you are into the treatment plan, be sure they know that this important day is coming up, they will make sure he is there to walk his daughter down the aisle!

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I just want to send some prayers and good wishes your way.

I go to Yale also - I have been very happy with my care there.

As far as the insurance - I have a PET every four months and every four months it gets rejected. Once it is rejected, my Onc. writes a letter and then starts calling them on the phone. He always wears them down! I swear they reject some things just assuming no one will question it - but if you give them enough flak - they might come around.

And, as for your daughters wedding - we will all be expecting photos in a month of your husband and daughter walking down the aisle!

My prayers are with you -


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Linda, I hope you get some more encouraging news soon. I agree with the others here who say most people involved in cancer medicine are usually quite flexible in scheduling around our lives. Also, Janet has info about the PET but if you are afraid to take the risk, don't worry so much. Dr West on cancergrace.org has written articles about his doubt of their value. He seems to think they add little to the picture. I think I recall some of his reasoning is around the belief that if it's not big enough to see on the CAT scan, it's not big enough to treat. Anybody remember?

I will be sending positive thoughts and energy your way.

Judy in New Jersey

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We went to Yale on Friday. We met with the surgeon. The biopsy report was not in and won't be til Tues. or Wed. of this week, so we don't see thier oncologist til next Tues. the 23rd. I don't think surgery will be in the plan but they might want some tissue from a lymph node I keep feeling that all of the delays are letting this beast spread further inside of Jim and I see him getting worse. He is on percocet every four hours. After the biopsy, i seems his back stiffens up and he can barely get out of bed. Life is from the couch to the bed, maybe a little walking around the yard and sitting in a chair. A week's wait is so hard. He also has little appetite....and is already very thin.

We willl try to fill the week with some errands for the wedding. He needs to get measrued for the tux , etc. We have 185 people flying in from all over for this big wedding that a few weeks away seemed like such a positive event and now none of us have our hearts in it. We just want him feeing better. Also, I lay awake at night hoping God will give me the strength to do all that needs to be done. Our kids live 45 minutes away and are work 12 hour days in their careers. My daughter's boss is a peach and he may allow her to come here and work from home one day a wekk. Son is in the financial corporate enviromnent and I don't even think he has told anyone....that is a dog eat dog world.... They do come weekends but I just wonder about all of the changes that need to be made. Plus, I have an 87 year old mother living alone 30 minutes away. I have no other family, my brother and Jim's sister both died in their mid 50"s.....so that is it. We are never saying "why us" because we have been blessed with wonderful lives, I just pray that I wil be able to take care of him and stay healthy. Thanks for listening.....

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Oh goodness Linda, you sure have a lot going on. It sounds like the family is very busy, and a bit spread out - hopefully everyone can tap into one another for strength. And you know that you can tap into here for strength! Dip into this collective pool, and continue to keep us posted when you can. I hope that the doctors can find something to help your husband so that your hearts can all be back into the wedding. I'm sure your daughter appreciates all the support you are giving her, but likely would understand if you need to take a "breather," as well.

I'll be thinking of you,


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