My latest cancessories

 

So apparently the numbness I am experiencing is concerning, even though it’s not the neuropathy we are warned about with Taxol and it’s cousins where the fingertips and bottom of the feet are numb.   My oncologist said it was carpal tunnel but it is getting worse almost daily. I wake up to two completely numb hands and have to shake and flex them to get the blood circulating. I hadn’t put two and two together until she asked about my feet but I have noticed one or both will “fall asleep” when I’m watching television in the evening.  I have had carpal tunnel in the past when I typed for 8-10 hours a day and it was painful. This is not.   I was told I may not be able to complete the 12 rounds. I will wear these splints at night to prevent my nerves from compressing in the wrist causing numbness. If I still have it, then it’s the Taxol.  Since I’ve had the complaint from week one and it’s been progressively getting worse she wants to stop so I don’t have permanent damage. I don’t want to stop. I have cancer. I was told I needed 16 rounds of chemo and I want 16 rounds.  I know that sounds ridiculous, but I don’t want to be sitting in her office in 3 years and hear it’s back and we should have done more the first time.  On the other hand I was told from the beginning I was likely getting too much chemo, but since there is no way to predict if the cancer will come back, mine is hormone receptive and I am relatively young and there was micro-metastasis in the sentinel node, we would throw everything at it.

She brought up my genetics appointment again too.  It was moved back to June when I will be between chemo and radiation. I have mixed feelings about it.  I need to do it, especially for my daughters, but I don’t want to open that can of worms just yet. I’m tired of thinking about cancer. I don’t want to be told I should have had a mastectomy after all and I did all this for nothing.  I don’t want my 22 and 26 year old daughters to have to make decisions about their breasts and ovaries before they’ve had a family.

Otherwise, the appointment went well except for the unleashing of my paranoid obsessive disorder

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15 comments

  1. Laura Renegar · May 1, 2012

    I know exactly how you feel about the brca tests, but I can tell you that it’s a powerful feeling knowing that taking that test is also taking control….of everything. My brca test came back positive the day after my lumpectomy. Then I had chemo. During chemo I took my time and did my research and made my decision to go ahead with the bi-lateral mastectomy and to have my ovaries removed. I wish I had done the brca test ten years ago and been proactive with my surgeries then I might not have had cancer. Triple negative cancer. I was thankful to take control of something, finally, and make my decisions and move forward.

    Now I have the info I need for my children to get tested when they are older, and in the meantime, my daughter can be watched closely. We are not having her test done until she is ready to make decisions with the information she is given. She is only 23.

    I just looked at it for the silver lining that it is – it is information, powerful information. That can alter your life, with or without your permission. But one way or the other, if it’s positive, you will find out eventually.

    I know it’s hard to even begin to imagine something else after chemo…especially something huge like a bi-lat. But knowledge is power and having this test available is a huge blessing!

    Good luck with your decision – love your blog !

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    • mainelyhopeful · May 2, 2012

      I wasn’t told I was being recommended for testing until the day of my first chemo (after surgery) and they were in no hurry to see me. They made the appointment for April and then changed it to June. I don’t understand the thought process of that. I think testing should be done before decisions are made, but what do I know? I’m just the patient 😐

      I do agree though that information is powerful and definitely a silver lining. I love your blog too!

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      • Laura Renegar · May 2, 2012

        I guess they did mine right away because my Mom died of her third battle with breast cancer. Her Mom had it when she died but didn’t die of it and two of my aunts had it….so, I thought I was pretty much positive. I just wish I had dealt with it BEFORE the cancer and been proactive. Life would have been a lot easier this past year. And you know with trip neg – if it comes back, I am in big trouble….so….I had no other choice than to move ahead with my decisions, well, not really. We always have a choice, but you know what I mean. I love having the info for my kids, now we just hope and pray that they both are negative when they are tested later in life and then this brca stuff will be over !

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      • mainelyhopeful · May 2, 2012

        I guess in my case the tumor board suggested it and they did not see my case until I was already in treatment. I would hope with a family history like yours they would have sent me first. It is good to have the information, especially for our daughters.

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  2. eddiesandcurrents · May 2, 2012

    Dang. Dang, dang, dang. Why can’t it be easy (relatively)? I’m sorry you’re having this problem and hope the splints help. Extra prayers and good vibes for you.

    Like

  3. Denise · May 2, 2012

    Have you iced your hands and feet during Taxol infusions? I did it to keep my nails in good shape and it has worked. As a result, I have had no neuropathy. Chemo nurse ice dialates fingers and toes and keeps chemo from going there. I just use two small dishpans I got at a dollar store. Chemo Nurses get me ice. I wear socks and stick my feet in. And wear lightweight gloves for my hands. I put them in and out so I don’t get frostbite, but it has really worked. My Oncologist said based on my experience, they are going to tell others.
    It is all so hard and challenging!

    Like

    • mainelyhopeful · May 2, 2012

      I’ll ask about it. My oncologist is baffled because my symptoms are not really neuropathy, but are clearly caused by the Taxol. I’m glad it’s going well for you and I hope that continues!

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  4. Susan · May 2, 2012

    Sorry you have to go through so much with this. Saying a prayer for you and hoping things get easier. Know how you feel with the splints. Have to wear a sleeve and glove every day now for different reasons but it can be a pain. In fact the whole cancer thing is a pain, I just am thankful I have lots of new blog friends that I can share experiences with.

    Like

    • mainelyhopeful · May 2, 2012

      Thank, Susan. All in all I really haven’t had it so bad. Probably why something so relatively minor threw me for a loop.

      Like

  5. bgillen · May 2, 2012

    Strength and love to you my friend. Ask your onc. if you can take a “break” from chemo for a couple months. I did it over the holidays and It was wonderful. I almost got to forget.

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    • mainelyhopeful · May 2, 2012

      I was going to ask about maybe doing the last 5 on an every other week basis instead of every week if that might somehow lessen the effect. I still have to do the radiation so I can’t postpone for very long. A break sounds nice though 🙂

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  6. Swiftbird · May 11, 2012

    Have you tried B6 and glutamine? I had taxotere and carboplatin, DD every 3 weeks. I started to get some neuropathy toward the end (and my nails started to get the funk) — sadly, my chemobrain would often take over and I would forget to take them (in addition to a fastgrowing aversion to taking pills in general). But I recall it did help…

    I never did the ice thing. I’m always cold so it skeeved me out thinking about it…and never got that bad.

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    • mainelyhopeful · May 11, 2012

      I take a B12 complex.. twice as good? lol I think I’m past the danger zone of the nails going bad. I’ve kept them super short and with layers of polish. Not sure if that made a difference or I was just lucky 🙂 On the cold thing.. I have to use the bathroom enough while they are running all those fluids in me. Soaking my hands and feet in ice water would just be asking for trouble.

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