Update on Al

mumphy
mumphy Member Posts: 440
edited March 2014 in Esophageal Cancer #1
Hi everone,


Just thought I should keep you posted. Al had his mri and they couldn't find a vein for contrast and wouldn't use his port. He is supposed to have the pet scan on Monday. He is trying to do the exercises the the physical therapist gave him to do, but after he does them he has alot of pain and it's harder for him to walk so I'm not pushing him to do them. I'm afraid something else will break. They did order a cane for him and showed him how to walk up and down the stairs.

He wants to get out and do things but between the back and leg pain he has neuropathy in his feet from the chemo, but he tries. We go for the big Drs meeting on Thursday the 11th.

I HATE, HATE, HATE THIS DISEASE. IT'S HORRIBLE. SORRY I HAD TO VENT THAT!!!
Thursday will be the day we decide if he will restart chemo or not. If the they tell us that
the chemo will be able to get rid of the mets in his spine and the cancer hasn't moved anywhere else we will try one treatment and see how he does. The doc already said that if he
does it he will do it low and slow due to all the trouble he had during his pre op chemo.

I have investigated palliative care and I think that is the way we want to go. I am going to ask about it on Thursday. I found out that if you have palliative care they order your meds and they get delivered to the house and the insurance will pay for it(Maybe) thats what I heard, and since the insurance will not cover his meds we might be able to get them paid for that way. It sad and funny the things you learn as a caregiver.

Well thats all for now. Thank you all my CSN family I'm so happy I have you all.

God Bless,
Kath

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    Al
    Will keep praying that they can give Al something to clear up those back mets and he tolerates the chemo well. Boy you sure are entitled to hate this disease, haven't been thru all you all have and I sit and say how I wish I had never met up with this stuff. Hope the PET goes well and have been praying for you both. That is interesting about the palliative care and paying for meds. They have told me they can't tell the insurance company I eat supplemental foods besides the tube feedings because it is not allowed???? supposed to starve to death? think some of the rules the insurance companies have come up with are plain crazy. Hugs and prayers for you, Kath and Al. take care,
    Donna70
  • Caballero38
    Caballero38 Member Posts: 35
    #3
    Al
    Hi Kathy,
    Thank you for the update on Al. I'm sorry you’re going through this. And yes, you have the right to hate this horrible CANCER!!! I sure do. In fact let’s scream it together "I HATE CANCER!!!' I hope he does start to feel better soon.

    I started my chemo about 4 weeks ago, and I just finished a week of radiation. If you remember I broke my neck and also, they found a lesion on my hip. So, I’m receiving radiation treatment on my neck and on my hip. I can feel a little bit better on my hip. I don't feel much different on my neck. I do not have that many side effects. The only issue I have is when I receive my neck treatment. I get anxiety attacks, and they place a mask on my face to hold my head in place and that is like torture to me, but with the anxiety pills I've been able to handle it fine.

    I saw my oncologist yesterday and he says we'll do another scan in about two moths to see if chemo is working. I sure hope it is.

    Please know, I am continuing praying for Al and your family. I know how hard all this can be. I can see how hard it is on my family too, so I pray for your family and hope God intervenes and makes things easier for Al.

    Sincerely,

    Luis Rodriguez (Caballer38)
  • unclaw2002
    unclaw2002 Member Posts: 599
    #4
    Will keep praying this is so
    Will keep praying this is so hard and vent all you need. I hope Al begins to feel better he is lucky to have you by his side. Cindy
  • oriontj
    oriontj Member Posts: 375
    #5
    I'm praying for both of you
    I'm praying for both of you for a good outcome...I HATE THIS DISEASE ALSO..REALLY HATE IT.
    jan
  • 38sallyb
    38sallyb Member Posts: 87
    #6
    Al
    Hi Kath,
    We will all keep praying that God gives you the answers you are seeking. I don't blame you for hating this disease. I don't think there is a person on this board that hasn't said that exact sentence! We ARE blessed to have so many on this board to listen, share our pain and pray with us. We are doing that for you and hope you and Al can feel the results of prayers, sharing and caring.
    Stay strong, my friend,
    Sally
  • MAE66
    MAE66 Member Posts: 66
    #7
    Hi Kathy,
    When I read your
    Hi Kathy,

    When I read your vent about this disgusting, vile monster of a disease, I though you were being kind. No reason to be sorry.

    Our Dr. set us up with palliative care about a month ago in anticipation of needing it. When/if we do need it, I think it will be a godsend. They come to the house for evaluations and take care of the perscribing. We do have a co-pay for the visit, same as our pcp co-pay. They said if we were concerned about the co-pays, they would also perscribe over the phone and would not charge us for the home visit. I think some of the meds are covered completely, others I will have to run to the pharmacy to pick up. We have not had to use it yet, but it is nice to know they are there. One warning, where we live the palliative care practice is part of a large hospice group, when they first came to the house alot of the literature had the hospice logo, and the nurse used hospice talk. Paul kind of freaked, I said something to the nurse and she reassured him he was NOT in hospice, but still, it would have been nice to have a heads up.

    Take care,
    Susan

    PS Paul is hanging in there. They are thinking theat the liver problem are caused by the chemo. drugs. They have looked with PET, MRI and CT and nothing shows up on the liver as cancer. We are in the same place a you, not sure what the next step will be, to continue treatment or not, it will be up the the Dr.
  • chrisk06
    chrisk06 Member Posts: 110
    #8
    Kath,
    I HATE THIS DISEASE
    Kath,

    I HATE THIS DISEASE TOO! I always said i wish cancer were a person so i could punch it in the face. You and Al are in my prayers.

    {{BIG HUGS}}
    Chris

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