Life does not end with a stage IV diagnosis (really!)

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  • intothewoods
    intothewoods Member Posts: 449
    edited December 2015

    Hi LivinAZ,

    When I was first diagnosed with metastatic disease I attended a support group at the Cancer Support Community in Los Angeles. They used to be known as the Wellness Community. It's all free and they have lectures and classes in addition to support groups. My spouse attended the caregivers support group which is helpful even for those significant others whose partners do not need physical care from them. They have a location in Phoenix- the link is below.

    http://cscaz.org/

    I'm with Caryn about the antidepressants. I take effexor and wouldn't go without.

    Sending you love and a hug and warm wishes for brighter days soon.

    Lisa

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  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited December 2015

    Thank you for the responses. I am having a bad night. All I want is a hug and someone to say it's going to be OK.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited December 2015

    LvinAz, hey, you can vent all you like, without apology.

    The boyfriend thing...relationship issues, especially when things aren't going well, are certainly difficult and can make you feel despair. Sometimes things work out by themselves. Please do consider counseling if necessary, either just you or with your boyfriend. Realize it's tough for him, he wants to love you but worries that some day you will not be here...it can be scary for him, too yet society is always pushing the idea that men must be strong. See if the two of you can take things just one day at a time.

    I second Caryn's recommendation for meds, either antidepressant or antianxiety meds, which I take. It helps take the edge of fear off and if I feel a wave of anxiety, I just get busy and it goes away.

    As for the family thing, sometimes we romanticize that being near them will make everything okay, but that's not always the case. (I am peopled out after a busy holiday season spent with family and need a break.)

    To fight the despair, writing is always good, write out how you feel. Three pages every day if you can. Then make a list of things to do when despair hits. Call a family member, listen to great music, dance, exercise, watch a funny show or escape in a great book, take a drive. Refer to the list and do things on the list when you need to pull out of a nosedive. We are here for you.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited December 2015

    LvinAZ, Divine is so right on with the suggestions to keep busy, occupied, get some meds. Time to pull out all of the stops to get some relief. The worse I let my anxiety get, the worse I feel, then I cry and feel even worse. It's a vicious cycle. I can go for a pretty long period of feeling pretty OK when I work or do a project or talk on the phone or watch some comedy. Today I was having a teary terrible day because I was starting a new med already and let my mind get into a free fall. Turns out my head was worse than the actual appointment and I'm feeling fine now.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2016

    This seems like a good place to share this story. https://mbcnbuzz.wordpress.com/2015/06/11/sandras-...

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  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited January 2016

    dlb, thanks for sharing this!!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Deanna,

    Love the article. Now, if we could only figure out why some do so well for so long

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited January 2016

    Deana great article I just checked out a video from Chrisbeatcancer.com he interviewed a doctor who thirty years ago was diagnosed with stage four breast cancer. Great interview would love to share it but  doesn't work on my iPad. They are out there ladies , I don't understand why we aren't studying these woman what is different what are they doing right. Her oncologist had given her two years with bone mets and a lung met she has outlived him. She is 80 years today and pretty fit.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2016

    They are trying to figure it out mbcproject.org Consider joining

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited January 2016

    Thank you DLB for sharing....I love those inspirational stories, it definitely gives me hope!Smile

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    I have often said that having stage IV bc does not give us a pass from some of life's other trials. I mentioned my older dd's pending divorce but I have not mentioned something even more upsetting. Since early December , my younger dd (yes, the one who is pregnant) has had elevated white blood cell counts. Slightly elevated counts are not uncommon in pregnancy, but hers were more than slightly elevated and not coming down. She had no infections or fevers and felt well. Her OB sent her to a hematologist. He was concerned that she might have chronic myeloid leukemia (CML). Though not common in young females, it is not unheard of in pregnancy. Hematologist monitored her levels for two weeks and when there was no change, did more extensive blood work. With the holidays, everything took much longer than usual. We were all terribly stressed,but made a concerted effort to keep busy and not make ourselves crazy until test results were in. I especially made an effort to set a good example for my dd to minimize her stress. On top of that, her husband left for Israel this past Monday (he leads Birthright trips). Finally, the hematologist called this morning and said it is not CML or any other form of leukemia. I cannot even describe the feeling of relief! She will continue to be monitored by the hematologist, as the reason for the high white cell count is still unknown, but it seems we can eliminate the worst case scenarios. The OB confirms all is well with the baby, so we will try to relax and enjoy these next few months until baby Miles is born. I will sleep very well tonight.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2016

    Oh, Caryn! What a horrible thing to go through. I'm so happy to hear the verdict was no on the CML or any other form of leukemia, and that baby Miles is doing well! Dealing w/mbc is nothing compared to something like that happening to one of our kids. I'm so glad she's okay. Yes, sleep well! (((Hugs))) Deanna

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  • annieoakley
    annieoakley Member Posts: 870
    edited January 2016

    Caryn, I'm so happy to hear that your daughter does not have CML or leukemia. I can just imagine the fear and anxiety you were going through. Sleep well tonight knowing everything will be okay.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Thanks, Deanna. In that crazy way that mothers have of trying to protect their children and put them first, I tried to bargain with G-d. I said " Please, let me have progression, but keep my baby and her baby safe. I really meant it too but am eternally thankful that things have worked out for my precious dd and grandson.

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited January 2016

    Great news!!!

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited January 2016

    OMG Caryn, It must have been so hard to set that example and not stress out entirely. Soooo glad it's not worst case! Deanna, you are so right, it would be so much worse to be one of our kids than us....Sleep well and can't wait to see a new baby announcement!

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited January 2016

    Caryn, big sigh of relief

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Wow, Caryn. That sounds very stressful. As dlb says, it is a whole other ballgame when we fear for our children. I can understand that kind of bargaining you did with God, too. It doesn't seem fair for rough things to continue to happen even after an mbc diagnosis. It would seem that mbc should be enough.

    Yet, your daughter's situation has a positive outcome. I'm so glad! You have really been going thru some things as a mom these past weeks. Wishing for all the best for you, your girls, your grandkid(s).

    ~Camille

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited January 2016

    That's wonderful news, Caryn! So happy for your family.

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited January 2016

    Caryn, very happy that all is well with mother and baby!

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  • ChelleG
    ChelleG Member Posts: 540
    edited January 2016

    Caryn, I am so happy to hear it! Life just keeps on happening, doesn't it

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  • intothewoods
    intothewoods Member Posts: 449
    edited January 2016

    Caryn I haven't been keeping up with this thread and was horrified to read about your dd and then so happy to read the outcome. What a horrible scare and with your sil traveling!

    I hope your school year is going well and your students are delighting you with the wonderful moments of humor and growth (especially noticeable after break in my experience) that only first graders can.

    Wishing you well and look forward to seeing pics of Miles. I am still in awe over your picture of granddaughter :-)

    Lisa

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited January 2016

    Caryn,

    I am so happy that your daughter's test results were good. I can only imagine the stress you were under until you heard the good news. Now you can look forward to the birth of Miles with far less fear.

    I, too, recently made a bargain with God. I offered myself for progression or worse instead of a bad outcome for my husband's treatment for his recent kidney cancer diagnosis. I don't know if God accepts bargains, but I am willing to try.

    Lynne

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    Lynne,

    I'm sure many of us understand the bargaining tactic when faced with the illness of a child or loved one. We know that there is no logic to it, yet our love for our family, and desire to protect them, trumps logic.

    Thank you all for your kind words and concern over what was a frightening few weeks. Since dd's husband is still in Israel, I got to spend some nice relaxed, and worry free,time with her this weekend. Older dd was in and out too as her washer broke down so she was doing laundry at my house. I have a small SUV, so I helped her pick up some new furniture to replace what she divided with her soon to be ex. Tonight we're all going to her house for dinner to finalize the baby shower plans. The invites were designed by my SIL (baby's father). They are Lion King themed and really cute.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited January 2016

    Lynne, that is horrible that both you and your DH are going through this. I totally get the bargaining too as when I think of all of this situation the biggest thing I worry about is how well or not my DH and kids are going to....Thinking good thoughts for you both. Lynne, Not so long ago I used to get annoyed that my kids would always be here doing laundry. Now I would adore the fact that they were close enough to come over and do that! They are all moved out and two are far away and I hate it!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2016

    Lynn, so sorry to learn of your husband's diagnosis. I will put you & he on my prayer list and hope for all good things. I don't think we have to bargain up our health for the sake of someone else's. I just don't think God works like that. Bargain to do volunteer work or something! (Hope you don't mind my attempt at humor in this situation. I don't mean to make light of it in any way; I really feel for you both).

    Caryn, how warm and cuddly, a Lion King theme; makes me think of the all-encompasing lyrics to that beautiful song from the movie:

    It's the Circle of Life
    And it moves us all
    Through despair and hope
    Through faith and love

    Till we find our place
    On the path unwinding
    In the Circle
    The Circle of Life

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited January 2016

    Caryn - Just saw your post. I'm so relieved things have turned out well for your dd. I can only imagine the stress on you and your family. Now you can truely celebrate

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited January 2016

    Good point about God Divine! You always have such logical thinking. have you girls seen the Lion King parade at Disneyland? One of the most spectacular things ever!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2016

    I don't mean to be kvetching about something as mundane as a common cold, but I will 😬. I came down with a cold right before the long holiday break and it took the better part of the break to get over it. After two weeks back at school, I caught another, worse cold and have now spent the MLK weekend trying to get over it. I still feel somewhat awful, especially when I wake up and in the evening. Yes, I have been hydrating, soup eating, vitamin C swilling etc. I guess it has to run it's course. I'm going to my classroom to get ready for the week (too sick to do it on Friday, after dismissal). These colds are an occupational hazard. The good news? I don't have TB (we have to be tested every few years for credential ing purposes). I'll focus on that 😜.
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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited January 2016

    Oh my goodness, Caryn. You are really looking on the bright side -no TB! Lol. I do hope you feel better soon. It is a shame that you were sick for the long weekend.

    Lynne

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