Blessed To Have Found You All

sangora
sangora Member Posts: 213
in Esophageal Cancer #1
I may be in somewhat of a unique position here in that I am not only the EC victim, but my primary care giver as well. I do have a strong support system thru long time friends but as all of you know, it's not the same. I don't mean for this to sound like a pitty party because I do not feel that way at all. It just hit me today how much I have begun to rely on all of you for information and another view of things since I don't have that "in-house". It's very different when you go see the docs, hear what they have to say and then mull it all over in your own head, then make a decision and hope it is the right one. As have all of you, I have had some really rough times over the past year and a half but there have been good times as well. Otherwise I would not have kept on keeping on. Have been in the hospital several times over the past 6 weeks so my docs and I decided to be more pro active this go round of treatment. I got Toxatere last wed, went to have a Nulasta shot on friday, literally collapsed into the techs arms that was trying to draw blood from my port and landed in the ER. I was once again dehydrated so they gave me a couple of bags of fluid, IV and sent me back to the cancer center for my shot and I came home. The actual shot was easy, the aftermath tough but not as bad as I had imagined from the horror stories I had read about and been told. Today my lab work came back and was absolutley perfect. I got thru this treatment cycle without having to go back into the hospital. This bit of good news will help me do the shot again after my next treatment in 2 weeks. I'm on that wonderful 21 day cycle. This is my 5th different chemo drug since this all started and if anything can be worse than Epirubicin this one is. Though I have to say that it seems to be getting the job done. My goal is to live to see my best friends daughter graduate High School in June. After that I will have to find another motivating goal. In the mean time reading all of your thoughts have helped me stay grounded and maintain some sense of connection. Love you all, Sam

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I wonder if home IV fluids would be a posibility
    Sam,

    Like you, I had dehydration issues with chemotherapy. I had Cisplatin, Epirubicin, and 5 FU and I just could not push enough liquids to keep ahead of the dehydration. Working with the oncologist we finally worked out a schedule of infusion on Monday, IV hydration on Wednesday and Friday of the week of infusion. It really improved things. I wonder if it would be possible to have a home care nurse come into your home and give IV hydration the day before your infusion and the day after to insure you do not become dehydrated again?

    I know what you mean about short term goals. I find that if I look forward to something not too distant in the future it makes the days that are not so great a little easier to deal with.

    I hope the next cycle goes better without the visit to the ER.


    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • sangora
    sangora Member Posts: 213
    #3
    paul61 said:

    I wonder if home IV fluids would be a posibility
    Sam,

    Like you, I had dehydration issues with chemotherapy. I had Cisplatin, Epirubicin, and 5 FU and I just could not push enough liquids to keep ahead of the dehydration. Working with the oncologist we finally worked out a schedule of infusion on Monday, IV hydration on Wednesday and Friday of the week of infusion. It really improved things. I wonder if it would be possible to have a home care nurse come into your home and give IV hydration the day before your infusion and the day after to insure you do not become dehydrated again?

    I know what you mean about short term goals. I find that if I look forward to something not too distant in the future it makes the days that are not so great a little easier to deal with.

    I hope the next cycle goes better without the visit to the ER.


    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Thank You Paul
    When I talked to the the nurse manager that works with me at the Couric Cancer Center yesterday, she mentioned that since they seemed to have gotten ahead of all the other issues this time around, that she wanted to talk to my oncologist about pre-scheduling some IV fluids around the next treatment since I can't seem to get enough fluids thru the tube to keep hydrated. After those first few days, the fluid in the tube seems to do fine. I measure my fluids everyday and generally take in a little over 2500cc's which for my calculated weight is more than I need on a general basis. Thanks for sharing your thoughts. Sam
  • birdiequeen
    birdiequeen Member Posts: 319
    #4
    So glad you are here too. I
    So glad you are here too. I hope you take good notes or record your appointments with your doctor. Even with two of us in the room, we often leave saying "what did he say about so and so" But, on the other hand there maybe times when my husband would rather I not be there....because I'll ask about something he may not be ready or want to know about. His doctor told us on day one he would never discuss my husbands case with any family "in the hall" or without my husband present. He feels that breaks Dr/patiant trust. I can see his point. No one wants to think there is something they are keeping from you.

    I'm with you on the goals....they are very important!

    This can be a great source of information too. Hope you will ask questions when you are mulling over your options. There seems to always be someone here that has helpful input.
  • sandy1943
    sandy1943 Member Posts: 824
    #5
    Sam, When I underwent
    Sam, When I underwent treatment, there were so many events taking place. Even with the side effects and surgery, I only had to miss one. It helps to have an event to set our goals toward. When the surgeon gave me my surgery date I got so excited he thought I had lost it. I had so hoped and prayed for surgery to be after this event and it was four days later. I felt so blessed.I had done everything that I had wanted to do, so I was ready.
    Praying you will keep feeling better and can get a handle on the dehydration problem,
    Sandra

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