Why was I stronger DURING treatment than I am now?
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Janet--I'd reach for Us magazine but I'm too busy playing Candy Crush Saga on my phone.
Dlia...if my doctor told me "don't worry about it" I'd respond "I'd worry less if I understood what I'm looking at. The report clearly states that these numbers are out of range...why is that not a problem? At what point might it become a problem? Why measure it if it doesn't matter if it's out of range?"
Last onc blood test, my calcium was high, which made me afraid that I might have bone mets. The nurse said "You're probably just taking too much calcium. Take fewer supplements". I did, and the number fell back to normal range. Another time eosinophils were out of whack, but I was told that is mostly related to allergies, and it was the height of allergy season.
A friend of mine who has been a nurse, nurse practitioner, PhD nurse said that my (and perhaps your) thirst for information is actually quite unusual. She said most people don't want to know, hardly glance at the reports, and never ask questions. I've found that once a doctor understands that I'm NOT one of those people, she is usually much more forthcoming with information.0 -
Just want to say hi and thanks for all of the good thoughts coming my way.
I am in NY and will have the operation tomorrow at 10. Ct scan showed no spread but the cells are high grade so I'm very glad to get this thing OUT!I have to say, don't wait people! Time=stage! Push! I'm reading Cancer Shmancer for the third or fourth time, by Fran Dresher. I recommend it. She says "Open a mouth!" She is so right! We HAVE to advocate for ourselves!
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Tim,
I will be in your pocket tomorrow, lots of positive energy & good wishes...
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im there too, timbuktu!
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Hurray for no spread, Tim! Thanks for the book recommendation...although if I read Fran Drescher I know I'll hear that voice of hers in my head!
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We're all right there with you, Timbutku. Please let us know how you are doing.
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Timbuktu, praying for you!!
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CDFR, I had been getting the reports since I was doing chemo, the doctor never said anything so I never thought anything was going on. I never paid attention to the results. But this time when I got them I looked them up to see what they indicated. And just to make me think even more my cousin asked me this morning did they ever test me for Lupus... she said her numbers were up that's when they started checking her before her diagnosis she also had breast cancer. My sister that passed away was diagnosed with Lupus too but she refused to accept it. After cancer I don't want to add anything else to my plate...
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Timbuktu, praying for you!
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Timbuk: Healing wishes....
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sending you sunshine and healing thoughts
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(((((Dlia))))
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dlia, i completely dislike when docs dont say what they see, or suspect, too.
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Timbuktu,
Love and hugs from me too
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Timbuktu,
I'm with the others being happy that there is no spread and sending healing wishes for what you are going through now.
SpookiesMom, I'm glad you're posting here. It is a place where people understand the aftermath of treatment. You are right that most people want us to say we're doing fine, even when we're not. Treatment brings out the warrior in us but after treatment the warrior needs to rest and the inner good nurse needs to take center stage. I wish I could remember that myself more often. I keep trying to keep pace with the pre-BC me and it just ain't happening. I am still me, but a new me In many ways--some positive feeling and others negative feeling. Just heard my husband putting away the clean dishes spontaneously. So grateful that he understands that I still need help.
My only goal for today is to slow down and really listen to what my body needs.
Hugs to all,
Peggy
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Great husband, Peg! mine still does that too. Think they might actually like us?
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Ladies,
Feeling very wobbly tonight. One of the women I had chemo with has regional recurrence. She only in her thirties. She is lovely too.
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....i am so sorry for you to hear that, wintersocks. its like we all do watch each other with love and fear and hope, and it is scary to hear about for us. but you will be fine! hugs for you, and for her.
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Wintersocks - What a lousy blow. I'm really sorry for your friend. And I'm sorry for what it's doing to you. But try to remember that her story is not your story. I know those words probably aren't helpful at this time. And I know how 'wobbly' feels. So - I'm thinking about you.
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Janet-I like what you said, "her story is not your story." I spent time with my stage 4 friend today and I'm feeling wobbly too, Wintersocks.
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Janet M, I read some of your blog, you're a wonderful writer. Fun, pain, grief, love, all touchingly related.
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I felt well after chemo but before radiation. That was over a year ago and I haven't felt very well since. My doctors are trying to get to the bottom of it.
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I do some volunteer work for a local BC-related nonprofit, and last night the organizer held a dinner party to thank a bunch of us. There were some women there that I knew, and some that I was meeting for the first time. A few things struck me about the group:
-I was the only one who seemed to have issues with fatigue so long after treatment. Whenever I meet people like that, I worry that it's "all in my head".
-One woman said she still has chemo brain, 10 years after treatment.
-There was a woman there who had just had her third surgery (full mastectomy), and was going for another round of chemo/radiation.
-As far as I can tell for the others, BC was something that happened and is now behind them.
Just a small sampling of the many way this disease (or should I say, these diseases that we lump under the one term, "breast cancer") affects people.
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Regarding recovery from BC treatment, my new oncologist says that many parts of the body and brain only really begin (in a fair number of people) a year from their last treatment. For me, since I had chemo before surgery that would mean that I may only truly begin to recover April 9, 2014. This has taken a lot of pressure off me to "worry" too soon about my neuropathy, chemo brain, energy levels, etc. that being said I do monitor my day today health (including daily breast exams after yoga) so that if an inexplicable change occurs I can bring it to the onc's attention.
I'm sorry each time any of us changes stages of BC but I do like to stay optimistic. I read "her story is not your story" (I think Janet-1 said it) a few posts ago. Great way to think of it when my anxiety gets cranked up by news of others' health status while being really sensitive to the needs of that person too.
Hugs,
Peggy
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I saw a study somewhere that chemo brain can last forever. Oh Goodie. The fatigue too. Just because we all react the same, but differently to treatments. Why some can "be the old normal". I'm not back there, doubt I ever will. Don't beat myself up about it.
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Supposedly a third of women have fatigue up to 10 years after treatment...I'm guessing that they just stop measuring after that point, and by then we're 10 years older, so it's almost like saying it's permanent. I have read also about chemo brain sometimes being permanent. Mine is much better, but I still get flashes of it, especially on days when I'm struggling with fatigue, too.
Spookiesmom, I wish I could learn NOT to beat myself up about it! I look at all the things I want to do, or even simply at my bank account, and feel like I need to do more, more, more!
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It's been one year today since I finished chemo. I immediately caught pneumonia. I started Tamoxifen in April and have had two reconstruction surgeries. I feel like I will be tired forever.
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I agree with the statement her story is not your story... My sister that passed away went to Cancer Treatment Centers of America because the cancer had spread to different areas of her body. She tried to get me to go while I was still doing treatment but I didn't feel I needed to go and those are the words I would tell my husband. Her story is not my story... Sometimes when we tell people of some of the medical challenges we face they tell you the most horrific story but we have to remember like someone said earlier we all may have been diagnosed with bc but we don't all experience the same side effects or outcome. Love you ladies!!
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Chemo brain, fibro fog, cog fog. It goes by different names, hits at the darnedest times. I just giggle, point to my lack of hair, and say chemo brain.
As for not beating my self up, I don't have the energy anyway. If I need a nap, I sleep. Those killer dust bunnies aren't going away. Sure, I could spray Spookie with End dust and slide her across the floor. But then she would need a bath. I have to plan for that!
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Spookiesmom,
I love your line about sliding Spookie across he floor, can I borrow her for a few days ?
I am really fatigued today, 28 rads down, 5 to go...toasty, roasty & itchy..
Hope all has a good, relaxing weekend
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