My mother asked me a very tough question tonight and I don't know how to answer her

Lisa13Q
Lisa13Q Member Posts: 677
edited March 2014 in Ovarian Cancer #1
Hi Everyone,

Hope you are all well. I am down in Fl. with Mom and she is doing pretty damn well. She hasn't had chemo for 6 weeks and is enjoying every second. Her doc wanted her to get a CA-125 down here and if it has elevated at all, come back to NY. My mother said, "no", I want 2 months completely off. She has an appointment May 2nd and said she'll find out then and until then, "I am going to enjoy my happy apartment". Overall, she is doing great. She is still 93 pounds but....her mood is excellent and her energy much improved.

Ok, here's the tough part: she really struggled through her chemo, especially the cisplatin. She was hospitalized twice and just plain had no quality of life at all. She asked me tonight if the dying process was as miserable as chemo....Her gyn/onc has told her that should she have a recurrance (and my mother is no fool she knows it's likely) she will go on doxil. She is concerned (rightfully so) that it will be as horrible as the previous chemo. She has been very clear that she would rather die and let the cancer take it's course than experience that again. But she is afraid of that course as well..is it miserable etc? these are the questions she is asking me.

I truly respect that she is making decisions now from her heart and experience rather than fear, AND concerned that I have no idea how to reposnd to this..I have never had chemo and truly haven't been close enough to someone in the "dying process" with cancer to know what that is like.... This is a tough question I know...I know you will all have thoughts....Thanks for your input...OH one last thought...I think I am the only one my mother can talk to about this. My sister gets too upset and just says to her, "you'll be ok". Although my mother appreciates that, she also says she has to be realistic. She has changed a lot. I know this is a hard question an I hope not too terribly straightforward, but ....it's her process right now...

Comments

  • msfanciful
    msfanciful Member Posts: 559
    #2
    Hi,
    For me as a cancer
    Hi,

    For me as a cancer survivor (stage IV), early on particularly during the early phases of my chemo treatments, I said a lot of things then that I can't imagine right now. Things i.e., I NEVER want to go through chemo again, I would rather die than experience the zombie effects of chemo, etc., etc.,.

    Nevertheless, the human spirit IS truly amazing in that we are very resilient beings with a spirit and strength to always strive to live!!! Actually, since my cancer I have never lived as much as I have now. Funny isn't it?

    I've never been in the presence of one's passing with cancer so I'm not qualified to give that answer but I am all too familiar with the fear on ending my life in a miserable and painful manner. Still at this point and time for me, quality of life is VERY important to me and as long as I have that quality (by my definition for me), then I will go on.

    Once, and I feel very strongly about this; I am unable to partake of my simple blessings of life it would devastate me and at this point...I just don't know.

    I am only at my third year, so please bear with my answer this life is still new to me, however; I can't wait to see how the other suvivors/longer suvivors reply to your question.

    Maybe in their answering your question, I too will find an answer.

    Many prayers for your mom and you,

    Sharon
  • Barbara53
    Barbara53 Member Posts: 652
    #3
    joy in life
    My neighbor works for hospice, and every time she asks about my mother the question is the same: "Is she still experiencing joy in life?" The answer is still yes. Mom has had no treatment beyond tamoxifen since September, and she is slowly, slowly winding down.

    I think one of the myths about dying is that it's horrible, but it's not looking that way to me. For the past several months, Mom has been "debriefing" her life, sharing stories I never heard, and it's been a wonderful experience. She doesn't know she's dying on a conscious level, but inside she does. She's insisted on cleaning out every closet in the house! And she's been having big dreams with the recurrent theme of getting things in order.

    Of course, this process is far easier to accept in someone who is almost 80 and has had a wonderful life than in younger women whose lives have been thrown against the wall by this disease. Apples and oranges.

    Your mother sounds like a wise old soul. You're a lucky lady.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #4
    Hi Lisa, thanks for checking in.
    After I finished my 6 cycles of cisplatin/gemzar I felt the exact same way. I got my CA down to 18 and took the summer off. I mean, off!! No tests, no cancer boards, no reading anything related to cancer. That cisplatin was so bad, I lost so much weight and energy, I never wanted to do chemo again.

    My CA did creep up and I started doxil last September. I had some blister problems at first, but no nausea, fatigue or anemia. It has been a breeze compared to cisplatin. My CA is stable at this point.

    I think that we have all asked ourselves the tough questions, and some of us more than others. I tend to process all the harder stuff when I don't feel well, and can't sleep in the middle of the night. Then, when I feel good and have energy, I go on as if I didn't even know what the word cancer was. I think that is a coping skill (some call it denial) that we are born with to get through the unthinkable tragedy we are sometimes facing.

    I have never been with someone when they died, but have talked to a few people who have. My very good friend was a hospice nurse for years and we have talked about the whole dying thing. She said that almost all of her patients died peacefully and that is what is so cool about hospice. They do everything they can to make sure it is peaceful. She said that for the most part, people die the same way the lived. If they were quiet in life, they were usually quiet in dying. If they were feisty in life, that is the same way they died.

    I admire your mom for taking control of her own life and also processing with you, at the same time enjoying her time. She is so blessed to have you!

    Hugs,
    kathleen:)
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #5
    death, dying and chemo.
    Lisa,
    Glad your Mom is feeling well. I had 3 rounds of IP ciplat/taxol. It was pretty draining for me. Although I never had nausea and my labs were always ok. I was fatigued and couldn't wait for it to end. I remember thinking I don't know how much more of this I can take. I've just had my 4th infusion of Doxil. I had mouthsores, very painful. They were easily repaired with an oral rinse. Rashes on my legs, chest, abdomen and feet. If it itches I put a bit of hydrocortisone on. My feet look awful. They are red and peeling but not painful. These are the worst of my symptoms along with fatigue. I have no nausea, no yucky feeling and I get to keep my hair. All in all I think I could stay on this med happily for as long as it works. If your Mom starts Doxil tell her for most people the side effects are minimal, nothing compared to the cisplat.

    I worked as geriatric RN for the last 12 years. I've watched many people die of many different causes. In my experience, many of these people are unresponsive prior to death. Whether it be hours before or sometimes days before. I've seen family members go to extreme measures to keep their elderly loved ones alive. Sometimes these measures just prolong the death process. I always try to be non-judgemental and encourage my co-workers to do the same. Have you and your Mom talked about what a living will and healthcare proxy? I think it is WONDERFUL that you are able to handle these frank discussions. I can imagine how hard it is. Some people in my family are unable to handle me talking about death and leaving my young children motherless. They are just unable to handle it. I understand that sometimes people just dont' know what to say so saying 'you'll be ok. I just know it!" that seems like the right thing for them to say.

    My brother in law died of oral cancer at the age of 46. They had a 6 month old baby when he was diagnosed. He lived a little over 2 years from diagnosis. He never gave up and never complained. I mean NEVER complained. He had a very rough time of it. Oral cancer can be VERY bad. In the end he became too sick to continue chemo and never bounced back. In the days before his death he was lethargic and on pain medicine. He slept most of the time and seemed to be in no distress. His death seemed peaceful. It is so hard to talk about but it is a part of life.

    I don't know how old your Mom but I know I will probably not live long enough to watch my two young boys grow into men. I probably won't live long enough to watch my grandchildren being born. If I live 70 years, or even 60 years, I would feel blessed.
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #6
    lost my post
    Dear lisa, I just replied to your post an dthen lost my post...here was my main points.

    Three cheers for you mom, telling the docs what she wants to do. You are an awesome daughter, supporting her decisions. Doxil is easier~just follow the precautions for hand/foot syndrym, and make sure you mom is drinking ensure or some sort of this type of drink and also protein powder. I was told even carnation instant breakfast drink to make sure she is getting enough protein.

    Hugs ♥ Prayers Bonnie

    the other post was better but oh well
  • catcan
    catcan Member Posts: 119
    #7
    Hi Lisa
    I am not in remission unfortunetly. I started on this trek last April and went through chemo on Carboplatin and Toxil. I had a good 5 mo in between and my markers went up so I just had my second round of Doxil. This has been so much easier than other chemo. No joint pain I take anti-nausea for 5 days and I have to take pills for the heartburn. I have been working while on it. I take a week off after and it has been okay. I think about going through this for the rest of my life and am very willing to do so. Life is precious and I plan to liveit to the fullest on or off chemo. I don't know how I would feel if I couldn't function and don't want to just lay and waste away.but that is Gods choice just need to have faith. Best wishes for your mom tell her i'm praying for her.

    Thinking of you

    Cat

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