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Just need some good thoughts
by maybebaby29, Nov 05, 2009 10:02PM
I haven't posted on this board much (mostly infertility back in the day for myself). But I have at times regarding my mother.
She came into this "diagnoses" as a possible stage II only to find out after biopsies/mastectomies, she was a stage IV metastisized (sorry if they mean the same thing). She wasn't HER2 and wasn't a candidate for herceptin (a drug I used to work closely with in advertising).
She was diagnosed in Dec 2004 off the bat with the spreading to her spine (4 tumors), spleen tumors (small and numerous but not a concern), liver tumors (again, not a concern), bone issues (don't remember if it was cancer or tumors), possible lung tumor but her lung collapsed during the biopsy which was utterly painful.
She did one radiation treatment then oral hormone therapy and a zometa IV. She had zero side effects. She did this until 2008. Not bad at all. She said she felt fine (a little sore but she is in her early 70s), no nausea, nothing. Just her back hurt. Plus the zometa shrunk the spine tumors. Hooray. The rest was staying low and no growth.
Then in 2008 (about when I told her I was pregnant; she was ecstatic since we didn't think that would ever happen; first grandchild; I'm an only child), a PET scan showed it no longer worked .She went to Tamoxifen. Hated it (out of fear of side effects) and got off. They gave her some other choice. It did her ok for a few months.
Jan 2009...she needed to go to oral chemo. Ok...nausea but not horrible. Diarrhea. Zometa.
Summer 09--it's no longer working. Needs traditional first round of single chemo drug. And that's when it happened. Every month it turned into a new chemo. She lost her hair, got a wig, got sicker with side effects. She looked so skinny for my son's Christening.
Fall 09--port put in. She never wanted this (she fears all side effects to the point of irrational; she believes every side effect WILL happen to her. Not discounting but I also know my mom's hyper-reaction to things). They said that they'll give her a break if the chemo didn't work. It didn't. She went off of all treatments for 2 months.
Yesterday I got the call.
"The doctor said that I'm on my last chemo try. There will be no other options. She told me to start making hospice/estate plans. I need you to do all of that for me."
None of this was a surprise. I'm not crying yet I did a little when I talked with my dad. I'm stunned, tired, drained, numb, fed up. This has been the final blow to me. I've been dealing with severe anxiety (some depression) since my son, my husband's business is tanking, my is possibly in limbo depending on how health reform goes through, marriage is in serious need of help (we're in marriage counseling), my son had a difficult first 6 months and I still have flashbacks/sever worry now that the sick season is starting again, my dad isn't in the best of health (heart issues), their estate is messed up, and being an only child, I have no one once both parents die. And now the news that THIS IS IT for her. Doc gave her 6 months max.
I don't know where to start, what to say, what to feel on top of dealing with all of the other serious issues in my life. I called my therapist for a recommendation for meds because I just worry for myself and how to be the best mom to my son.
Sorry this is long and upsetting to others. I wish you all the longevity and healing and strength out there. I've never dealt with something like this before. My reaction to death has always been to run and for this, I can't run.
She came into this "diagnoses" as a possible stage II only to find out after biopsies/mastectomies, she was a stage IV metastisized (sorry if they mean the same thing). She wasn't HER2 and wasn't a candidate for herceptin (a drug I used to work closely with in advertising).
She was diagnosed in Dec 2004 off the bat with the spreading to her spine (4 tumors), spleen tumors (small and numerous but not a concern), liver tumors (again, not a concern), bone issues (don't remember if it was cancer or tumors), possible lung tumor but her lung collapsed during the biopsy which was utterly painful.
She did one radiation treatment then oral hormone therapy and a zometa IV. She had zero side effects. She did this until 2008. Not bad at all. She said she felt fine (a little sore but she is in her early 70s), no nausea, nothing. Just her back hurt. Plus the zometa shrunk the spine tumors. Hooray. The rest was staying low and no growth.
Then in 2008 (about when I told her I was pregnant; she was ecstatic since we didn't think that would ever happen; first grandchild; I'm an only child), a PET scan showed it no longer worked .She went to Tamoxifen. Hated it (out of fear of side effects) and got off. They gave her some other choice. It did her ok for a few months.
Jan 2009...she needed to go to oral chemo. Ok...nausea but not horrible. Diarrhea. Zometa.
Summer 09--it's no longer working. Needs traditional first round of single chemo drug. And that's when it happened. Every month it turned into a new chemo. She lost her hair, got a wig, got sicker with side effects. She looked so skinny for my son's Christening.
Fall 09--port put in. She never wanted this (she fears all side effects to the point of irrational; she believes every side effect WILL happen to her. Not discounting but I also know my mom's hyper-reaction to things). They said that they'll give her a break if the chemo didn't work. It didn't. She went off of all treatments for 2 months.
Yesterday I got the call.
"The doctor said that I'm on my last chemo try. There will be no other options. She told me to start making hospice/estate plans. I need you to do all of that for me."
None of this was a surprise. I'm not crying yet I did a little when I talked with my dad. I'm stunned, tired, drained, numb, fed up. This has been the final blow to me. I've been dealing with severe anxiety (some depression) since my son, my husband's business is tanking, my is possibly in limbo depending on how health reform goes through, marriage is in serious need of help (we're in marriage counseling), my son had a difficult first 6 months and I still have flashbacks/sever worry now that the sick season is starting again, my dad isn't in the best of health (heart issues), their estate is messed up, and being an only child, I have no one once both parents die. And now the news that THIS IS IT for her. Doc gave her 6 months max.
I don't know where to start, what to say, what to feel on top of dealing with all of the other serious issues in my life. I called my therapist for a recommendation for meds because I just worry for myself and how to be the best mom to my son.
Sorry this is long and upsetting to others. I wish you all the longevity and healing and strength out there. I've never dealt with something like this before. My reaction to death has always been to run and for this, I can't run.
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it is hitting me that my son is turning one year the day after Xmas. I turn 39 the end of Nov. This will be my son's first and last bday for her. My last bday. My last (and my son's) Xmas. 6 months from now is Mother's Day. I'm so mad. I know she's old and I know with her diagnosis that this was bound to happen and obviously I'm going through the stages of well you know with her (denial, anger, etc). but you know...my life right now is just so messed up. If I didn't have my beautiful son who makes me smile every day, I don't know what I would do. friends have been amazing minus one good friend who used to be my best friend. Not one @#$# response, wish, prayer thought. I was there for her father's death and other struggles. She hasn't been supportive in my son's baby shower, the news of his birth, and now this. the only time she sent quick note was when he was in the hospital and I was so @#$# scared he wasn't going to make it.
I'll never understand people and things like all of what's going on takes my faith away regarding human kindness. I get more from strangers than those I expect to be close.
Sorry to ramble. Tough year for me with all of these issues in my life.
1. Even though you have been dealing with your mother's illness for 5 years, the call you received yesterday marked the beginning of a whole new phase, which represents a crisis in your life. When we are in crisis mode, everything is frightening, overwelming, and often seems too much for us to cope with, and our emotions are off the chart. However, this intense crisis mode tends to last only about 6 weeks, and then we begin to make some kind of adaptation to the new reality, however serious and unpleasant it is, and call upon coping mechanisms that help us move into survival mode. In other words, give yourself some time to adjust, and things will gradually become a bit more manageable...
2. In this particular situation, it sounds as though you are already experiencing anticipatory grief (focusing on last bithdays, last holidays, etc.). While this is very disconcerting, it is also normal when we have some warning that a loss is in the offing, rather than experiencing a loss that is "a bolt from the blue." And although many events will be tainted with sadness, this anticipatory grief allows you to do and say everything you need to in your relationship with your mother, and as a result you will have fewer "if onlys" and "what ifs" to plague you after the actual loss has occurred. (You may want to visit the grief and loss forum at that time, if not before.)
3. Because of the heavy responsibiltities you already carry, and the additional ones you will be taking on, it is especially important to take good care of yourself at this time, by trying to get adequate sleep when possible, following a healthful diet, getting some exercise, and finding ways to to recharge your own battery, so you aren't totally overcome with "caregiver burnout." I couldn't tell if you are in individual psychotherapy as well as couple's counseling; if not, that could be an important source of support for you during what this extremely very difficult time.
4. Although it hurts when people do not come through for us as we wish or expect, please try not to waste too much of your precious energy thinking about them, but instead concentrate on being thankful for the people who may surprise you in a positive way. A crisis has a way of separating the wheat from the chaff, and eventually you may decide you can do fine without those who proved to be "fair-weather friends." But also keep in mind that different people have different talents and abilities. One friend may be eager to help in practical ways like babysitting or cooking or cleaning, but be wholly unable to handle emotion-laden discussions, while another may be there for you when you need to talk or cry, but may tend to disappear when practical help is needed, and still another be good at Internet reseach if you need information, and so forth. The secret is to figure out which person to turn to for which need you have at any particular time. This will both increase your chances of receiving what you need, and decrease the likelihood that you will wind up disappointed, hurt, and resentful.
My thoughts will be with you and your mom...
bluebutterfly