Update on My Dad

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sal314
sal314 Member Posts: 599 Member
edited March 2014 in Esophageal Cancer #1
It's been awhile since I've shared anything. Not much new to report (guess that's a good thing). My father is having his 2nd dose of his second round of Taxol today. Then they will do new scans next week. He still hasn't lost any of his hair. So, I'm wondering if the dr.'s are givening him a much lower dose? Isn't that unusual? They (my parents) don't really share much of what the dr.'s tell them, which drives me crazy!

Well, for being 7 months out since his diagnosis my father is still doing pretty darn well. He STILL has not trouble eating and swallowing. So hard to believe! But very thankful. He still goes to work 4 days a week. He hasn't golfed much because he can't really twist and turn to swing a golf club like he's use to and I think it makes him so upset, he'd just as well not go to the golf course at all. I suggested to him to just go and putt or chip, but he won't. For him everything is so BLACK or WHITE. Ugh.

Saw him lastnight. He says he's feeling "fine" but again, I really have a hard time believing that. He's slow to get up and down out of his chair, but does seem to move around ok once he's standing. The biggest difference I've seen in the last couple of weeks is that he is withdrawing more and more. Doesn't say much when he's with his family and just kinda hangs by himself with his Iphone and plays some games. I went over last weekend (just myself) and watched the Huskers football game with him. That was the only time he seemed more like himself. So...thank God for football! :)

Anyway, it's just been extremely stressful watching him and my mother deal with this situation all by themselves. As an outsider looking in, I just see two very lonely, scared people who are pretending they are fine and can do this journey all by themselves. It certainly isn't how I'd handle it, but I guess I just have to respect their way and deal with it! However, being an only child, it's just really, really hard.

Sorry for the lengthy post. Guess I needed to vent more than I realized. Thanks for listening! :)

Blessings to you all,

Sally

Comments

  • linda1120
    linda1120 Member Posts: 389
    #2
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    Your Dad
    Hi Sally, I am pretty new to this site, but when I went through chemo for my ovarian cancer they gave me Taxol and I lost every hair on my body. I guess the dosage could be the reason for him not losing his. My husband is going through chemo now and they gave him Cisplatin and 5fu and they said his hair may thin, but will probably not fall out.

    We have five kids between us and I am open and honest with them. They all, other than one,want to know exactly how their dad is doing and I tell them. I was raised in a very secretive home and hated it. I probably ask too many questions and drive the doctors nuts, but they just smile and tell me to ask anything I want to. I am sorry your parents aren't letting you be part of the process. I would be so thankful to have a daughter to go to my husband's appointments and give us the support. I have one daughter that lives here and reacts like a little girl and doesn't like to talk about it, and have four other kids that live away and would love to be here to help. Go figure! :-) Have you tried to sit your parents down and tell them you want to know everything and go to the appointments with them? Sometimes parents thinking they are sparing their children pain, but in fact are causing more by not including them. I hope you can spend more days watching football with your dad.

    Linda
  • Donna70
    Donna70 Member Posts: 852 Member
    #3
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    linda1120 said:

    Your Dad
    Hi Sally, I am pretty new to this site, but when I went through chemo for my ovarian cancer they gave me Taxol and I lost every hair on my body. I guess the dosage could be the reason for him not losing his. My husband is going through chemo now and they gave him Cisplatin and 5fu and they said his hair may thin, but will probably not fall out.

    We have five kids between us and I am open and honest with them. They all, other than one,want to know exactly how their dad is doing and I tell them. I was raised in a very secretive home and hated it. I probably ask too many questions and drive the doctors nuts, but they just smile and tell me to ask anything I want to. I am sorry your parents aren't letting you be part of the process. I would be so thankful to have a daughter to go to my husband's appointments and give us the support. I have one daughter that lives here and reacts like a little girl and doesn't like to talk about it, and have four other kids that live away and would love to be here to help. Go figure! :-) Have you tried to sit your parents down and tell them you want to know everything and go to the appointments with them? Sometimes parents thinking they are sparing their children pain, but in fact are causing more by not including them. I hope you can spend more days watching football with your dad.

    Linda

    good advice
    Hi Sal,
    Think Linda has given some good advice about asking them to let you in on the process. I think she may be right about not wanting to cause you pain. Sometimes if they let you in, you might be able to give them more help with decisions. Glad your Dad is not having trouble eating, I am amazed. I lost the ability to swallow anything more than cream of wheat after my first cycle of chemo and did not really eat till after surgery. That will be great if it keeps up. I would encourage him to keep his nutrition going, it helps with healing so much. Hope that things change for you and your Dad and Mom will share more with you. I told my one and only child my son and he and his wife were wonderful to us and helped us with my sibs thru this ordeal. take care, prayers for all,
    Donna70 PS Welcome Linda to this site!!! This is a wonderful place to come for advice and comfort.
  • sal314
    sal314 Member Posts: 599 Member
    #4
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    linda1120 said:

    Your Dad
    Hi Sally, I am pretty new to this site, but when I went through chemo for my ovarian cancer they gave me Taxol and I lost every hair on my body. I guess the dosage could be the reason for him not losing his. My husband is going through chemo now and they gave him Cisplatin and 5fu and they said his hair may thin, but will probably not fall out.

    We have five kids between us and I am open and honest with them. They all, other than one,want to know exactly how their dad is doing and I tell them. I was raised in a very secretive home and hated it. I probably ask too many questions and drive the doctors nuts, but they just smile and tell me to ask anything I want to. I am sorry your parents aren't letting you be part of the process. I would be so thankful to have a daughter to go to my husband's appointments and give us the support. I have one daughter that lives here and reacts like a little girl and doesn't like to talk about it, and have four other kids that live away and would love to be here to help. Go figure! :-) Have you tried to sit your parents down and tell them you want to know everything and go to the appointments with them? Sometimes parents thinking they are sparing their children pain, but in fact are causing more by not including them. I hope you can spend more days watching football with your dad.

    Linda

    Welcome Linda and
    thank you for your kind words. First off, congrats for being a ovarian cancer survivor! I'm a breast cancer survivor myself. Nine years as of Sept. 14th:) When I went through my cancer treatment my mother was pretty supportive in the beginning. She's a nurse so she knew exactly what surgeons and oncologists she wanted me to go to. She was very helpful with setting me up with who to see. But after I started treatment, she kinda of pulled away. My father never once said anything to me about it it! Guess it's just too painful for him.I find it extremely frustrating that my own family can't or won't talk about my dad's situation with me! Seems pretty disfunctional if you ask me! LOL. I've told my mother numerous times that I really want and need to know what's going on with dad's treatments. She agreed and said she would keep me updated. Well, she hasn't of course. I'm always the one that has to bring it up and be a pest to her. She tells me things here and there, but it's always very vague and when I press her for more specific information, she gets very defensive and weird on me. So...I just back off and change the subject. I'm sure she is trying to protect my dad to some extent as well. I know he knows his situation is terminal, but I think he's still in deep denial and thinking he can somehow overcome it.

    To give you some background, since you're somewhat new, my dad was diagnosed with Stage 4B EC with mets to the liver back in March of this year. It's now spread to his spine. He went through radiation and then chemo, the same as your husband. But they had to stop it because he had such bad side effects. He developed 3 blood clots (one in each lung, and one in his leg) and his blood counts never recovered high enough to continue. SO...they didn't give him anything for about 2 months and when his counts finally got high enough they started the Taxol. So...there really isn't much else they will do if the Taxol doesn't work.

    Anyway...thank you for your response. I'm sorry that your daughter who is nearby is the one out of all your kids that can't handle the situation better! Go figure is right! LOL.

    Thank you for responding to my post. I will keep you and your family in my prayers.

    Blessings,
    Sally
  • sal314
    sal314 Member Posts: 599 Member
    #5
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    Donna70 said:

    good advice
    Hi Sal,
    Think Linda has given some good advice about asking them to let you in on the process. I think she may be right about not wanting to cause you pain. Sometimes if they let you in, you might be able to give them more help with decisions. Glad your Dad is not having trouble eating, I am amazed. I lost the ability to swallow anything more than cream of wheat after my first cycle of chemo and did not really eat till after surgery. That will be great if it keeps up. I would encourage him to keep his nutrition going, it helps with healing so much. Hope that things change for you and your Dad and Mom will share more with you. I told my one and only child my son and he and his wife were wonderful to us and helped us with my sibs thru this ordeal. take care, prayers for all,
    Donna70 PS Welcome Linda to this site!!! This is a wonderful place to come for advice and comfort.

    Thanks Donna!
    The fact that my dad can still swallow and eat is just a miracle really! I have this theory that God just knew that my father couldn't handle a situation where he couldn't eat and would have to be fed by a tube. It would just be too much for him and too much for my mother to see him in that state. SO... God decided to spare him that. That's what I truly believe. I also think that the fact he can eat and swallow with no problems is why he's doing so well. Because he's able to get the nutrition and protein he needs to keep fighting the cancer.

    I'm so happy for you and how well you are doing:) Hope things continue to go on the up for you! We all have to just count our blessings and enjoy the day, each day, we are given!

    Blessings,

    Sally
  • linda1120
    linda1120 Member Posts: 389
    #6
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    sal314 said:

    Welcome Linda and
    thank you for your kind words. First off, congrats for being a ovarian cancer survivor! I'm a breast cancer survivor myself. Nine years as of Sept. 14th:) When I went through my cancer treatment my mother was pretty supportive in the beginning. She's a nurse so she knew exactly what surgeons and oncologists she wanted me to go to. She was very helpful with setting me up with who to see. But after I started treatment, she kinda of pulled away. My father never once said anything to me about it it! Guess it's just too painful for him.I find it extremely frustrating that my own family can't or won't talk about my dad's situation with me! Seems pretty disfunctional if you ask me! LOL. I've told my mother numerous times that I really want and need to know what's going on with dad's treatments. She agreed and said she would keep me updated. Well, she hasn't of course. I'm always the one that has to bring it up and be a pest to her. She tells me things here and there, but it's always very vague and when I press her for more specific information, she gets very defensive and weird on me. So...I just back off and change the subject. I'm sure she is trying to protect my dad to some extent as well. I know he knows his situation is terminal, but I think he's still in deep denial and thinking he can somehow overcome it.

    To give you some background, since you're somewhat new, my dad was diagnosed with Stage 4B EC with mets to the liver back in March of this year. It's now spread to his spine. He went through radiation and then chemo, the same as your husband. But they had to stop it because he had such bad side effects. He developed 3 blood clots (one in each lung, and one in his leg) and his blood counts never recovered high enough to continue. SO...they didn't give him anything for about 2 months and when his counts finally got high enough they started the Taxol. So...there really isn't much else they will do if the Taxol doesn't work.

    Anyway...thank you for your response. I'm sorry that your daughter who is nearby is the one out of all your kids that can't handle the situation better! Go figure is right! LOL.

    Thank you for responding to my post. I will keep you and your family in my prayers.

    Blessings,
    Sally

    dysfunctional family
    Hi Sally, I had to laugh when you mentioned about dysfunctional family. Don't we all come from them! :-) I know when I had cancer my dad couldn't talk to me either and I guess my mom putting pressure on him, he finally called me weekly. Ironically he got lung cancer at 86 and I went to spend the last two weeks of his life with him. When we were sitting alone he apologized to me and told me he had no idea how bad chemo and having cancer was. I told him don't worry about it, I understand, and I did. Some people just can't handle dealing with death, so denial seems to work best for them. My daughter has been through a lot with me almost dying a couple of times and she seems to like denial too. I must say, she surprised both of us last night by stopping by for over an hour and a half and spent time with her dad and I both. She was very loving and supportive. She doesn't want details, but that is okay. We are going to a hospital in Portland, Or on Thursday for a surgical consultation and she is going to take care of our dog and pick us up from Amtrak in the middle of the night. I am thinking maybe I need to make requests of her more often, maybe she doesn't think we want or need her help. It really felt good to have her there for us.

    Are you able to request going on the doctor appointments with your mom and dad? I don't know how close you live to them. I am really sorry about your father's diagnosis. It has to be tough on all of you. My husband is 68 yrs old and doesn't like to admit he isn't still a tough guy, but this has humbled him. This is one tough cancer!

    Take care and good luck with your family, Linda

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