And the hits just keep on coming!

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I got some excellent news when I saw my oncology surgeon week before last. The mammogram was fine, nothing to report there. Great news! I really wasn’t stressing out about those results since no tests, not mammograms or ultrasounds or MRIs ever found any cancer in my breasts (or anywhere else) in the first place.

He poked and palpated, and I said ow, oooh, that hurts, that’s really tender. He seemed mildly surprised. Then I asked him if I should be asking him, or my plastic surgeon, or my oncologist, or even my radiology oncologist, why my hand hurt so much, and why the length of my arm on the inside, and my upper arm and breast, still hurt so much. I explained that I’ve had arthritis in my wrists and thumbs for years, when he said, “Give me your other arm.” He held them both to the front, examined them briefly and—here’s the crap news—said, “You have lymphedema. I’ll refer you to the Lymphedema Clinic at Princess Margaret.”

It was like something clamped my heart, stuffed it in a lead box and slammed the lid shut.

I had a very out-of-proportion fear of developing lymphedema from the very beginning of my cancer. My lymph nodes were the only evidence of my cancer, so I knew from very early on that they were stuffed with cancer, and they’d be going. Once the lymph nodes are removed—I had 15 taken out—the lymphatic fluid builds up in the limb—right arm for me—because the mechanism to keep it flowing out of the limb is gone.

I went to a seminar on lymphedema at Princess Margaret Hospital. I made copious notes, asked questions, asked questions about the answers. I was told that lymphedema happens to 20 to 30 per cent of women like me. I did every single thing suggested as a way to avoid and not trigger lymphedema, and I’ll list them in a later post.

I will have the condition for life. I have had a lot of time to train myself to put breast cancer as far back in my mind and heart as I can, so I can live without constant thoughts about it. But lymphedema? How can I ignore not seeing the knuckles in my right hand? I now have that rubber-band wrist that is so adorable in chubby babies, but is gross and unnatural on me. And the feeling of pain and tightness and fullness.

I held it together in his office, because it was the very end of the appointment. I cried in the change room, at the elevator, with my oncologist’s secretary (she was very sweet), then when I got to the car I just sat there and bawled. It was for me, a lifetime sentence of lymphedema, for triple negative breast cancer terror of metastases, for pain, for my dad… you name it, and I cried it out.

It will take the referral at least four weeks to get through the Lymphedema Clinic, so on the advice of my cancer navigator, I made an appointment with a registered lymphedema specialist at a physiotherapist office. That’ll be in two days. My man is coming with me to learn the different therapies, particularly the lymphatic massage. More on that after Thursday.

For now, it’s sleep I crave. I have been keeping track of my sleep hours in 24-hour cycles. Last Wednesday, Thursday and Friday it was 18 asleep/6 awake; 14/10; 16/8. Fatigue causes a lot of guilt, and I never feel rested. It’s a ripoff.

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7 Responses

  1. I’m sorry about the lymphedema diagnosis. That was my nightmare throughout cancer treatment. I’m always aware of the risk if, for instance, I ever have to have surgery on my shoulder or wrist because I play so much tennis. My acupuncturist treats patients with lymphedema. I don’t know where you live, but could acupuncture be part of your treatment plan, too?

    • Hello Kalison, Keep doing all the preventative things they say to do. Do you wear a sleeve when playing tennis? I live in Toronto, and once I have exhausted my medical coverage for physiotherapy ($300 a year! And a one-hour session with a certified lymphedema specialist is $110!) I will definitely explore acupuncture.

      Thank you for saying hello!

      • Hi! No, I don’t wear a sleeve for tennis. I haven’t shown any lymphedema symptoms. I do wear a sleeve and glove when I fly six hours or more. I think the sleeve and little glove were about $275. I think the costs are crazy. How are things going now with the lymphatic massage?

      • I am faithfully wearing the sleeve and glove every single day from early morning massage to pulling it off in bed and doing the full massage routine again. That seems to be keeping everything from getting bigger. One Friday, at the suggestion of a lymphedema physiotherapist, I left the sleeve and glove off until three in the afternoon and went about normal housework. I definitely got puffy from fingers to upper arm, and that night when I took the garments off, the pain was about a 5 on the back of my hand and inside of lower arm. It took until Sunday for the pain to go away. So I will not be trying that experiment for a long while!

  2. I can’t imagine the frustration you’re feeling 😦 HUGS ❤

    • I’ve been doing a TON of feeling sorry for myself. Breast cancer. Triple Negative BC. No primary site. Buggered toe nails. Radiation burns and skin colour change. Fatigue. Brain dysfunction. Now lymphedema, a lifelong, no cure chronic condition. Boo freaking hoo!!! If it weren’t for Netflix, I would bury myself under my bed.

      Thanks for the hugs. I do them as part of my exercises for lymphatic drainage, and name the buds. Yours is always at the top! ❤

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