Posts Tagged ‘lymph node dissection’

Before I move along to the chemotherapy leg of the journey, I need to talk about lymphedema. I don’t want to talk, or, rather, write about lymphedema. I don’t want to think about lymphedema. In order to avoid thinking about it too much, I’ve supplied a link per mention of the word lymphedema so that I don’t need to spell out the symptoms myself. But, to my chagrin, I read each lymphedema web site before linking in order to be responsible to my readers, and so now I have a head full of information that I had either forgotten or didn’t know until now. Like, for instance, I did not know that lymphedema is also called elephantitis – yikes.

Now that I’ve been informed or reminded, I’ve got fears and creepy fallacies created by the lords of paranoia lurking on the web worming around in my brain, so I must tell my story as an antidote.

In June 2009, there was so much drama in the lymph node dissection and the drainage sack and the seroma that I had a “so now what?” feeling when the drama subsided, and so inquired about lymphedema. Since I had to seek out the information, I imagined that Dr. Feldman might be avoiding the subject due to his guilt for removing the 30 lymph nodes from under my arm. Now I believe that Feldman was preoccupied with cancer and, therefore, swollen limbs were not at the forefront of his mind; and, maybe he, like me, learned not to dwell on the perchance of lymphedema. At the time, however, it was a worry for me and so I interrogated him. The good doctor’s response was to offer two prescriptions – one for a support stocking to be custom fitted to my right arm, and the other for a Z-pak in case of infection – and then he suggested that I have a chat with his nurse practitioner. I did. She gave me a long list of don’t dos:

  • Don’t lift heavy things like grocery bags
  • Don’t get manicures
  • Don’t garden without gloves
  • Don’t clean without gloves
  • Don’t fly without a support stocking
  • Don’t get IVs or shots in the compromised arm

In short, I was to avoid muscle strain and any chance of infection for the rest of my life. I was sorry I asked. There was only one item on the list that I felt that I could do forever and that was to take all needles in the left arm which actually would prove to be problematic during chemo, but I’m getting ahead of myself here. The point is that the list of don’ts didn’t seem reasonable to me.

  • I always carry several grocery bags at once to avoid extra trips
  • Manicures are the only way I prettify my hands
  • Gardening is all about hands in the dirt
  • As a multi-tasking mama, rubber gloves are an after thought if thought of at all
  • And, I just don’t want to wear support hose on any of my limbs.

So, what’s a girl to do?

I filed the list, determined to keep my mind off of lymphedema, and focused my energy on getting back on the tennis courts. So, my next question for Dr. Feldman was about physical therapy. He recommended a woman in Manhattan who specialized in pt for women after all manners of breast cancer surgery and I contacted her but she was expensive and not covered by my insurance. A little downhearted from the failed attempt, I called a friend.

Nicola Weiner of Pilates Central is a yoga and Pilates instructor plus a phenomenal physical therapist, and, although a very busy woman with a thriving practice and a brand new baby boy, she gifted me with her time and expertise. Just one session with Nicola and then daily adherence to the regimen that she meticulously sketched out for me in easy-to-comprehend stick figures, and I was playing tennis with full range of motion by the end of July. My reach was truly remarkable, as all of the doctors exclaimed, and, therefore, this is a big shout out to a PT angel – Nicola, you rock! Really. I can’t sing praises loud enough because I responded to her directions even though I’m generally a physical fitness dyslexic. Seriously, when the perky aerobics instructor commanded, “raise your left knee,” I raised my right; “slide to the right,” I bumped into the woman on my left, and so on, which was so humiliating that I quit all group instructions before the movie Perfect (be sure to click on this to see youtube of Jamie Lee) debuted in 1985. Twenty-four years later, to my amazement, Nicola was able to make my body respond according to instruction which is why, I’m sure, the therapy was so effective. I felt a mastery over the arm circles, light weight lifts, and stretches that she assigned to me, and that was great.

Regaining strength and flexibility was great. Playing tennis was great for mind & spirit, and, little did I know, but playing tennis was/is also great for preventing, guess what, lymphedema. That’s right. There’s something about the overhead motion of the serve that is perfect for keeping those lymph juices circulating which is also why fly fishing is recommended for breast cancer survivors. In fact, there’s a wonderful organization that offers fly fishing retreats for women to assist with physical, emotional and spiritual healing from breast cancer – Casting for Recovery, check it out. I have yet to check it out, but I’m thinking that fly fishing is in my future. But, for now, tennis is working, and a firm belief in phantom limbs or, in this case, nodes, is working also.

You know those stories about people scratching the itch of an amputated limb? Well, I’ve heard tell by some paranormal writer or alternative healer that body parts remain energetically intact after physical loss or malfunction. So, I choose to believe that I’ve got a phantom sack of very energetic little lymph nodes that are keeping the elephantitis away from me.

All’s well today.

And, now, on to the tales of chemotherapy.

In gratitude,



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The drainage sack had a proper name. It’s called a Jackson Pratt (J-P) or Hemovac Drain. If I had a better humor about it, I would’ve given it a nickname like Harold or Yoda and consulted with it throughout the day as it reminded me of the boil on Richard Grant’s shoulder that became an alter ego talking head in the movie How to Get Ahead in Advertising. Like Richard, I was quite horrified by the appendage. I didn’t like the mess and the bother. I didn’t like the concerns that went with it such as being wary of dislodging the tube or getting the dressing wet, and the warnings about infection. I didn’t like having an external man-made body part. What I did appreciate was that the little plastic sack was a teacher.

For instance, it taught me to be resourceful. The J-P or Hemovac kit came with a large safety pin to fasten the sack to the inside of clothing so that it wouldn’t bob about willy-nilly and pull the tube out. I found the pin challenging to fasten with my left hand, and so I turned my shirts, hooded sweatshirts, and bathrobe inside out in order to tuck the sack in the pockets. Besides preventing the bounce factor, it also buffered me from the cool rubbery plastic pressing against my skin which helped me to forget about the intruder for awhile. Until the area of the incision began to hurt and then to leak, which prodded my next resourceful act – I called for help.

My dear friend Olive is a midwife and nurse and not bothered in the least by the gooey viscera of the body human. I trust Olive. And so I called her when I started leaking. As I reread the Jackson-Pratt care instructions that were sent home with me from the hospital, I see now that it clearly states that “The drain may become blocked and begin to leak around the drain site. This is not serious. Replace the wet gauze with a dry one as needed.” I didn’t see that then which leads me to believe that I was probably in a panic state at the time. Panic is emotional quicksand for me. The more I squirm on my own, the deeper I sink; so it’s best to reach for help from someone on solid ground. Olive responded to my call, came over and calmly replaced the dressing and reassured me that the tube was in place, that indeed the hole in me was plugged up. The gentle touch, the gentle words in Olive’s lovely, lilting brogue were like a lullaby and I was put at ease.

Another lesson or really a gift from the drainage sack was that it kept me from fretting about the future. The critical awareness of the tube and the practice of measuring and charting the fluids kept my mind occupied, and, thus, diverted from worrying about the lab results and prognosis. Perhaps this is why hair shirts? Physical discomfort is very effective for keeping the mind trained in the moment. Who can think about grocery lists or where to vacation in August or a five year career plan when one’s nerve endings are throbbing? Anyway, the sack aided me that way. I devoted three pages in my little brown journal to complaining about that drain, and barely gave a nod to receiving the lab report:

June 23, 2009 – The sun is out after days on end of rain. I still have a tube inserted under my arm to drain lymph fluid. After eight days of tube it feels as though gravity is pulling on it and the tug hurts. I guess I learn courage, endurance, compassion for myself and others. I guess I learn how to receive sympathy and concern and all sorts of help.

The shift in my attitude, the contrast, reminds me of the many times in my life when I pridefully toughed out a situation alone. Depression, eating disorders, other illnesses… wisdom teeth extraction. I had all four wisdom teeth pulled and didn’t tell anybody. I was single and living in the city so I took a cab to and fro, stumbled into the Korean grocer afterward to stock up on ice cream, climbed the four flights to my studio apartment, and locked the door until the swelling went down. Crazy. I had some sort of whacked out notion that asking for help was annoying to others. My worst ever sunburn happened because I didn’t ask a beach buddy to rub Coppertone on my back. Well, never again will I let some cockamamie idea that my needs are inconvenient to others prevent me from asking for help. Cancer cured me of that. This diagnosis and all the tests and treatments require that I share my feelings, ask for help, and let people in. It is too much to bear alone.

Last night I went to a Shamanic journey and Reiki share at Julie Connor’s. Julie met me at the door with a hug and questions about the lymph node dissection and how the surgery panned out. I told her that they found a small amount of cancer in one lymph node.

She said, “Linda, take it from someone who had cancer, didn’t have cancer, had cancer again – you have the right to take your slides for a second opinion.”

My response was utter weariness at the idea of schlepping to another doctor. Eight days since surgery, a drain that’s still sucking 70 ml of lymph fluid out of my body daily, and I feel like I don’t have it in me to dispute or distrust.

Well, I don’t need to do anything today. I don’t even have to make a decision today. Just for today, all I need to do is rest and receive and heal and recoup my strength.

The Shamanic Journey and the Reiki share were amazing. In the journey, I was met by a gigantic white swan that let me curl up to sleep on her back while she flew through the galaxy. Then, the Reiki tables came out and Tony, a wonderful new friend, like the swan, called me to his table to rest and be lavished with attention and healing energy. Julie, the Reiki Master, stood by me during other peoples’ sessions and put her hand on my lower back and mid back at different chakra points. The energy from her amplified the energy coursing through me, and I believe she intended to boost the healing energy I was receiving while I was sending.

I’m so impressed and grateful for the loving way people are treating me these days. It seems like my “attraction energy” is at an all time high. I don’t understand it, but I love it.

In Awe,


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It disturbs me how little I recall about my second surgery.

I remember that my daughter stayed with a friend whose Mom is a dear friend and heroine of mine as she is a survivor & thriver after two battles with aggressive breast cancer. The fact that Debbie was vigorously alive and now able to help me gave me a lot of hope for the outcome of my efforts, so I remember that she was there for me that day.

My husband went with me and I remember that he let me drive to the hospital to keep my mind occupied, that he let me fret about his eating habits and listened while I chattered a blue streak, or was silent when I zoned out, and, as usual, he let me be whatever I needed to be, and then he waited… and was the first face I recognized when I woke up later that day.

My surgeon, Dr. Sheldon Feldman, was a panacea again. The only distinct memory I have pre-surgery is of Dr. Feldman parting the crowd of bustling attendants to greet me on the gurney in the operating room, and of him quipping, “We have to stop meeting like this.”

I don’t know whether I said or thought, “Much as I love you, we’re done after this, Doc,” and everything faded into a black anesthetic oblivion.

Then, I don’t remember anything for days. Nothing. And, I’m guessing that I don’t want to remember because, unlike the lumpectomy that had a painful few hours of prep before the surgery, all of the pain with the lymph node dissection was in the aftermath. There was a drainage sack. Oooo Ewwww I don’t really want to remember that drainage sack. As I type, visions are surfacing in my mind’s eye of the bloody pink, yellow lymph fluid that I had to measure and dump every four or five hours, and sensational memories are creeping under my arm of the plastic tube that was lodged in the pit, and all the ouches and yuckiness of being wounded are pummeling me with a truth that I ordinarily wish to flee. I am a physical girl living in a physical world, and I don’t like it.

Many years ago, a wonderful psychic that I’ve mentioned in this blog before, Nancy Anne Tappe told me that I had a “floating head syndrome”. She said that I was a Tibetan trance walker in past lives and that I’ve continued to have a disconnect from my body. I don’t know about past lives, but trance walking resonated with me. I walked all over Manhattan on a daily basis for a decade without ever knowing where I’d been. I was aware that I left my body. I consciously abandoned ship when in the dentist chair, or aggravated at work, or when confronted by another human being. In the fight or flight spectrum of animals, I was totally a flight being, and I fled without ever moving my feet.

But, according to Nancy, I needed to get back in my body and stay there. She said that the body is the greatest psychic instrument I have and, while on Earth, I’m to live in it and learn from it and to be in awe of it. Aw geez.

Flash forward twenty years after quitting all mind altering, out-of-body inducing substances namely drugs, alcohol, cigarettes, and even sugar; as well as practicing yoga, breathing into the moment, planting my feet, holding my husband’s hand, and being hyper-attentive to my daughter’s every bodily function, I am now mostly present and sentient in the moment. And, I have a hard time leaving even if I want to like when I’ve got a 1/3 inch round plastic tube inserted a couple of inches deep into my arm pit where a mass of thirty lymph nodes used to be. I was miserable and I told my little brown journal so:

Writing is the last thing I want to do these days. People tell me that I ought to write about this breast cancer experience. My mother says, “This will probably be your best book.” I say, well I doubt it because I’m not writing anything down now. Maybe I’ll have the desire or motivation or energy or will or whatever it takes to write to heal or to write to write when this *#!>ing tube is removed from under my arm. Right now I’m simply trying to wash my hair and brush my teeth without dislodging the damn drainage sack.

My friend Lesley just phoned to ask me about the surgery and other things and inadvertently helped me to get honest about being sad and angry by reminding me about missing tennis. Lesley was the perfect angelic delegate for the Universe to send today. She talks and walks true which is inspiring. Plus she’s able to hold the space for rage and tears without trying to fix me. Just what I needed – RELEASE – which is why I continue to vent in this journal now in illegible scribble done by my left hand.

(to be cont.)

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