Loss Versus Benefit

Author: Sheri Denkensohn-Trott

You would think by now that I am used to loss. I’m not referring to loss of a loved one, but rather loss having to do with my body. At 16 (I’m now 53), I lost the ability to walk and live a life without assistance. I’ve gotten used to that. But over the years I’ve dealt with loss and function of other body parts. Each one a little piece of me. Surprisingly, after the biggest loss you would think the smaller ones would be easy. But recent experience, shows that each new loss requires a period of adjustment.

Losses after my injury included my gallbladder, multiple surgeries resulting in loss of large and small intestines, surgeries to change my method of urination and elimination, and a right mastectomy 10 years ago. That loss was challenging because I saw it daily. Every morning when I got out of the shower, I looked in the mirror and saw the flat right side of my chest. But after drying off and putting on my prosthetic bra, I could forget about it for the rest of the day. I slowly adapted to that loss. Just another piece that is gone.

Recently I have been struggling with lymphedema. This is a condition that refers to the accumulation of an excessive amount of fluid in cells, tissues, organs and is clinically characterized by swelling. Because I am sitting down most of the day, my legs form “edema,” a secondary symptom of lymphedema that results from too much fluid being released from capillaries into the tissue, overwhelming the capacity of the lymphatic system. Over the years, I’ve been able to accommodate this condition by wearing larger sized shoes. My left ankle and foot always swell more than my right. But it was manageable and would decrease by the morning after a night of sleep with my feet up on a pillow.

Over the summer my left foot and ankle began swelling to the point that I could not wear any shoe. I got an infection in the toenail of my left big toe and went to the podiatrist to get the toenail removed. The infection went away but the swelling did not. A few months later I noticed that my foot and ankle were warm and starting to get a reddish color. This is a sign of cellulitis (skin infection that can be life-threatening if not addressed) that results from lymphedema. Again, I went to the foot doctor and had a course of antibiotics that cured the cellulitis. But the swelling remained.

Starting this past October, I went to the lymphedema clinic twice a week. The lymphedema specialist wrapped my left leg and foot with gauze and other soft materials to lessen the lymphedema. I subsequently developed a wound on the top of my left big toe and the tip of the same toe. The goal of these treatments was to lessen the lymphedema and promote wound healing. The wound on the top of my toe healed, but the wound on the tip was stubborn.

After four months of this repertoire, the lymphedema and wound specialist recommended that I consult with a foot and ankle specialist to see if he had any ideas on ways to promote healing of the wound on the tip of my toe. The foot doctor (my podiatrist) cleaned the wound and took out a little piece of bone, hoping that would solve the problem. I went back to the lymphedema specialist and things were looking good. We were optimistic. However, at the next visit there were signs of infection. The wound specialist and the foot doctor determined that there was likely infection in the bone of my toe preventing the healing. This type of infection is called osteomyelitis and can occur in any bone.

At that point, the best course of action was to have the “bone in the toe” removed so that healing could potentially occur. All the plans were made for this procedure. Not until I got to the outpatient surgery center and heard the doctor and nurses talking that I realized the “removal of the bone” was an amputation. Part of my toe was going to be removed. I want to rid myself of the infection and the weekly lymphedema visits, but it was a bit shocking to hear the word amputation.

The surgery went smoothly, and I did look down a couple of times. Currently my foot is wrapped so I haven’t been able to look at the toe. I will see it at my next wound clinic appointment. And thereafter I will be living with half of a big toe. I joke about it, but honesty I enjoy wearing sandals in the summer and painting my toenails. If I wear sandals this summer, my half toe will be there. Am I sad? Yes and no. I want to rid myself of the risk of infection and a worse outcome. But I admit that going through the loss of another body part is not easy. Especially one that can be easily seen by others. I’ve overcome being self-conscious about my skinny arms and bony chest. But now I have a support on my leg to prevent lymphedema and a short toe. It’s always a game of loss versus benefit.