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Prayers for my mom...

Discussion in 'Off The Beaten Track' started by Bailey_, May 30, 2011.

  1. Bailey_

    Bailey_ Guest

    Hi Everyone,

    Sadly, I need your help today... My mom was diagnosed with myeloma on Friday - in incurable form of bone cancer. She has only been sick for a month, but in that month we have made four trips to emergency, she has had multiple tests, and a major surgery. She has been told it was a gastrointestinal bleed, then ovarian cancer, then a tumor in her small intestine that had "shed" to the ovaries, and now the bone scan has come back to show myeloma. She is so weak, she is having trouble rising from lying to sitting position and walking to the bathroom - yet she won't go back to the hospital. She is just having her first treatment with the oncologist this week who is talking about chemo and stem cell transplant - very aggressive treatment because my mom is only 62 years old. Only, she is so weak, I can't imagine how she will do the treatment.

    This has all happened in a month. And, to add the the stress - my grandfather (my dad's father) passed away last Tuesday and the funeral was Saturday.

    I have been so strong through this all but I feel like I'm really struggling with this last news. I dread calling my parents home because I know the news is not going to be good. When I see my mom each day, I just want to cry because she is so pale and so weak. I'm supposed to go back to work today and I can't fathom going to work this morning. I can go from being fine to crying in seconds, and I'm exhausted.

    So, I'm asking sincerely, does anyone have any advice from personal experience or any resources that may be helpful in coping with serious illness?
  2. rudi

    rudi Well-Known Member

    I can't think of any advice, but I will keep you and your mom in my prayers. (((hugs)))
  3. soxxy

    soxxy Guest

    I'm so sorry. I'll certainly say a prayer for your mother now.
  4. KikiSashaFan

    KikiSashaFan Well-Known Member

    I have no advice, but I'm very sorry to hear that {{{hugs}}}
  5. Holley Calmes

    Holley Calmes Well-Known Member

    I will really pray for you this morning, Bailey. I know how hard this must be. The only thing I can tell you is that I have a friend who had aggressive chemo and stem cell transplant, and he did fine for a long, liong time! It gave him years longer. And he was so weak and frail, we didn't think he would survive the treatment, but he did! The fact that your Mom is at home and not HAVING to be in the hospital says a lot about her strength and determination. I know she looks weak, but I bet she can come through the treatment and have more time! Years....maybe total remission. I am 61 myself, and it's far, far too young. Her youth will help her.
    Last edited: May 30, 2011
  6. BittyBug

    BittyBug Losing Faith

    I'm so sorry about your mom, Bailey. :( Here are a few things that you might try:

    - Have you met with her doctor? If not, could you go to one of her appointments so that you could ask questions about your condition and treatment plan directly (without having it filtered through her or your dad). AFAIK (which admittedly, isn't a lot), myeloma is a blood cancer, not a bone cancer, but it is typically treated with stem cell transplants and chemo as you described. It's my understanding that it's also a condition that is frequently chronic rather than acute, meaning that patients can live with the disease for quite some time.

    - Research the disease yourself. Once you have direct and accurate information about her condition, read up on it to get a better understanding of what she's facing. Someone I know was recently diagnosed with a disease in the family of myeloma and I found it very helpful to dig past surface information to try to better understand the situation. For my friend's disease, I stumbled upon the personal blog of someone who also had the disease and it contained a wealth of information as well as a very interesting perspective - that much of the life expectancy information is out of date and not always applicable to an individual situation. First and foremost, because it's an average and someone has to be on the high end of the data that went into that average, so why not you (or your mom, in this case)? Second, it doesn't always adequately reflect the latest treatments that have been developed. And third, blood cancers are most commonly found in older people, so it's not always clear whether survey subjects succumbed to the disease or whether their life just ran it's natural course.

    - Find a support group. There are societies and research foundations for just about every disease. Once you have your mom's actual diagnosis, look for related societies and research foundations and check their web site for support groups that can put you in touch with other people like you who have a loved one with the disease.

    - Consider taking time off from work. I don't know what your job situation is, but if you're in the U.S., you may be eligible to take time off under the Family Medical Leave Act. If that might be an option for you (i.e., your job has at least some flexibility and you could forgo the pay), you may want to investigate that option.

    - Don't forget about yourself. You are under a lot of stress right now, so make sure you try to take some time for yourself where you can to recharge - yoga, meditation, a long hard run, any kind of exercise, a bath with a cup of herbal tea, immersing yourself in a good book - anything to take your focus away from worrying about your mom.

    Hang in there, and please post back and let us know how both your mom and you are doing. ((((((hugs))))))
  7. Holley Calmes

    Holley Calmes Well-Known Member

    Excellent advice, BittyBug. Knowledge is power.
  8. Wyliefan

    Wyliefan Well-Known Member

    All great advice. Adding my prayers for your mom and you, Bailey.
  9. attyfan

    attyfan Well-Known Member

    Bailey ... you and your mom are in my prayers.
  10. Holley Calmes

    Holley Calmes Well-Known Member

    What is your Mom's first name, Bailey?
  11. love skating

    love skating Clueless American

    (((Bailey))) My prayers and best wishes to you and your family. My father passed away last year from a four year battle with colon cancer (that we knew from the start was incurable). My only advice would be to treasure your moments with your parent. I think your being there for your mom is the best thing for her. And trying to make things as normal for her in abnormal circumstances is helpful. But know that there is no one right way to do things - everybody is different and wants different things. Some people want to fight their disease hard and for as long as possible, while some would rather have a shorter time with more quality of life. Some want a lot of people around them, while some only want their closest family around. I will keep you in my prayers.
  12. skatesindreams

    skatesindreams Well-Known Member

    You and your family will be in my prayers and thoughts.
  13. victoriajh

    victoriajh Well-Known Member

    how stressful for you =( I have no expericnce with this type of condition but my thoughts are with you and your family
  14. barbk

    barbk Well-Known Member

    Bailey - I will keep you and your family in my thoughts -- that is a big blow on top of your grandfather's death last week.

    LiveStrong has free one-on-one counseling and support for those affected by cancer -- it doesn't matter if you are the patient or a family member -- lots of support is available, and I have heard it is very good. They're not open today, but they will be open tomorrow morning:

  15. PAskate

    PAskate New Member

    (((Bailey))) - I will be thinking of you and your family.

    Here's another website for you - http://www.scottcares.org/ - Scott Hamilton's CARES Initiative. They also sponsor the Fourth Angel program which matches interested cancer patients and/or caregivers with mentors that have been through similiar experiences.
  16. skipaway

    skipaway Well-Known Member

    Your mother and your family will be in my prayers. I'm sorry for what you are going through. (((Bailey)))
  17. Gypsy

    Gypsy Watching the Leaves Change!

    Your Mom, You & All your Family are in my thoughts & prayers!
  18. overedge

    overedge doing shots in the Grublets on Ice dressing room

    <<bailey and family>>
  19. ChelleC

    ChelleC Well-Known Member

    (((Bailey)) praying for you and your mom!
  20. Cachoo

    Cachoo Well-Known Member

    My prayers for you and your mother and your family.
  21. MikiAndoFan#1

    MikiAndoFan#1 Well-Known Member

    :( Your mother is in my thoughts. My best wishes to your mother, you and your family.
  22. Bailey_

    Bailey_ Guest

    Thank you all for your kind words and your knowledge. I appreciate all your comments and your prayers. My mom's name is Deirdre.
  23. numbers123

    numbers123 Well-Known Member

    (((hugs for you and your mom)))

    Your mom might be resisting the hospitalization because she believes that she wouldn't leave the hospital. It depends on her experiences with hospitalizations after the diagnosis of cancer. It may be that she is feeling out of control of the situation (because she is - the cancer is causing her to have many procedures/surgeries) and staying out of the hospital or refusing to go is one way that she feels in control.

    As hard as it will be, talk to your mom about her wishes and if possible be non-judgemental if she really doesn't want to undergo chemotherapy. It is a hard discussion, one that I wish that my grandmother could have had with her children. She told me that she didn't want to go through chemo, but her children insisted that she did.

    If possible be present with your mom when she has chemotherapy explained and ask your questions too. However, with HIPAA physicians may not want to have you present. When my mom underwent som surgery 2 years ago, the MD wasn't to keen about talking to my dad with me in the room. Apparently mom neglected to tell her doctor it was ok to talk with me.

    The mmore.org site (multiple myeloma opportunities for research and education) has a lot of information about the disease and current/potential treatments. There is a tab for caregivers and clinical trials. Even if there is no support group in your area, there are on-line support groups that you can join in discussions.

    Do tell someone at work, they can be of support to you. Also contact your HR group - they may have Employee Assistance set-up that can cover short term resources for you.

    Encourage your mom to write down all her questions, and ask if she can have the nurse write down the answers to those questions. You may get answers, but forget them which is why it is a good idea to have someone write down the answers. She should also get the name of all medications she is being given as well as take in all the medications - prescription AND over the counter meds. Sometimes multi-vitamins interact with chemotherapy drugs. And if she is taking anything for pain for example tylenol can be toxic to the liver if taken in high doses and some chemotherapy drugs are filtered through the liver. Also any alcohol - even if it is only a glass of wine once a week or whatever. She should also indicate on the list of medications which doctor prescribed what drug - it will help in the coordination of care, especially given that she has had so many procedures done recently.

    Your mom should also indicate any ongoing treatments that anyone in your home is receiving.

    Long post, I hope it helps and I will certainly keep you and your family in my thoughts. Feel free to PM if you have additional questions or need to vent.
  24. made_in_canada

    made_in_canada INTJ

    ((Bailey)) Others have given really good advice. As far as coping, make sure that you take care of yourself. Delegate what you can, ease off on other commitments and make sure that you are eating properly and getting some exercise. Finding someone to talk to who isn't emotionally involved can be really helpful too.
  25. Bailey_

    Bailey_ Guest

    Thanks for the websites - super helpful. I've been trying not to google search too much because I can really freak myself out! I'm quite sure my mom doesn't want to go to hospital because she is worried she will never leave, but I'm worried about her ability to be safe at home right now. It's a very tough balance to achieve. And, I have learned this week I am surrounded by family and friends and coworkers who have been so supportive and kind. That is definitely something good to come from this whole experience. Thanks again everyone,
  26. Wiery

    Wiery Well-Known Member

    You've gotten excellent advice! :) My prayers are with you and your mom. :(
  27. Aussie Willy

    Aussie Willy Hates both vegemite and peanut butter

    Sorry to hear about your mum.
  28. millyskate

    millyskate Well-Known Member

    Praying for you and your family, Bailey... That is so hard.
  29. DFJ

    DFJ Well-Known Member

    Such a pretty name. We're all here for you...I'm sure you know that. Thoughts and prayers are with you and your mom.
  30. Bailey_

    Bailey_ Guest

    Her name is Irish although our family is Scottish (I always thought it was Scottish until I just did a search!). She jokes that her father never did learn how to spell her name. Most people have great difficulty pronouncing her name. But yes, I think it's beautiful too.