I have lived most of my life taking my skin for granted. Rashes, cuts, sunburns have usually healed without any intervention. I’ve had a few dermatology run-ins before the melanoma, but these earlier visits resolved with in-office procedures. Conceptually, it was interesting to consider my skin as an important body organ. In my day-to-day, I still thought of skin as just a cover for bones and other more important organs.
When the July 9, 2023 invasion of the pseudomonas bacteria wreaked havoc with my leg, I changed my thinking about skin. Within a few hours, a 23cm x 17cm (9in x 6.7in) area of skin was destroyed. Six months later, I am still dealing with the fallout.
I wrote about my leg in an earlier article that links to a google doc with images of the wound.
I am happy to report that the area of the wound today is 10cm by 9.6cm (4in x 3.8in). With every dressing change, we can see new skin growing in on the sides. The wound area itself consists of granulated, healthy tissue.
Along with the pain and tears and seemingly endless trips to the wound clinic, I have enormous respect for my skin. Its ability to heal is a miracle.
Treatment plan
My treatment plan has evolved over the months to accommodate the changing requirements of the wound. Initially, I was connected 24/7 to a wound vac and visited the wound clinic three times a week for dressing changes. On Wednesdays, the doctor removed necrotic tissue. The synergy of the wound vac managing drainage and the doctor removing necrotic tissue sped healing.
These days, I go in once a week on Tuesdays for a dressing change and a once over from the doctor. Occasionally he will (chemically) cauterize the wound area or remove overgrown tissue in the wound bed. He also removes crust on the edge of the wound. Two things of note: it’s good that scalpels are sharp; lidocaine is my friend.
As the wound heals, we’re on the alert to keep the moisture level of the wound just right, not too dry, not too moist. An overabundance of moisture — maceration — is a larger concern for me. Maceration refers to the skin grooves you might see when you sit in the tub for a while. Maceration is not helpful to skin healing.
To maintain the proper wound environment, I need to change the dressing myself at home in between clinic visits. Chris and I are now wound dressing experts. In the early days, I didn’t even see the wound because I was on my stomach during dressing changes. Today, I examine the wound closely and am comfortable with removing the old dressing and washing the area. Chris applies betadine antiseptic, and we wrap the leg with a new dressing.
The first time a shipment of wound supplies arrived at our house, I was over the moon. Equipped, finally, to treat myself!
To graft or not to graft
Early in the wound journey, many health professionals thought I would need a skin graft. My wound doctor was more cautious. Because of my overreaction to the bacteria that caused the infection, he was slower to jump on a graft recommendation. Ultimately, the decision was mine. I read up on grafts and have decided against the major procedure at this time. The thought of major surgery (to remove healthy donor tissue and place it on the existing wound), another wound resulting from the donor site (me), and a not insignificant chance that the graft would not take: all of these reasons helped me with the decision to wait.
Use it or lose it: Not just a catchphrase
From July 9-18, I stood up one time, under duress. The pain of the leg wound was too great. When I moved to the rehab hospital and started physical therapy on July 19, I slowly exercised through the pain. I didn’t know at first how much strength I had lost. It was during one of the early physical therapy sessions that I found out. The therapist had me position myself on my stomach and told me to lift and hold each leg, one at a time. I couldn’t move them at all! My brain knew what I was supposed to do, but my legs were not able to move. It was shocking. I knew I had my work cut out for me.
At the rehab hospital, I spent my days rebuilding strength. I first moved myself around in a wheelchair and very occasionally stood. I graduated to a walker when the leg pain was tolerable. Then I started using a cane, although those first times were terrifying. Quick turning movements resulted in near falls. By the time I was discharged on August 7, I was able to walk with a cane, but only if I concentrated fully on the action. My first weeks at home exhausted me. I expected to waltz right in to my house and start doing all the things I was used to. Fortunately, daily life presented me with all kinds of physical therapy opportunities, if only I could be patient with slow progress. My stamina returned, but only after months of daily living.
Today, I walk confidently, unaided. My knee on the wounded leg is still stiff, but I can straighten the leg. Hooray! I am not running yet, but am sure I’ll get there.
What a trip.
Health roundup
Remission. Just in case you missed it, I heard the happy news from my oncologist on October 31. I included a quick rundown of the CT scan here:
Colitis will not quit. I have received four Entyvio infusions, the most recent of which was yesterday. The drug is an immunosuppressant that targets the gut instead of the entire body, like prednisone. This is important since systemic steroid use likely predisposed me to developing the leg infection. I saw some improvement in October and November … and then a worsening of symptoms. This means that I am still essentially housebound. The standard treatment frequency is every 8 weeks, but since I experienced a setback after the November infusion, I will test receiving an infusion every 4 weeks. I haven’t ruled out trying another treatment but will see how the next couple months play out.
Lymphedema pump. I have a new compression pump for swelling (lymphedema) in my legs. The prescribed therapy is twice a day at one hour each. This treatment is time-consuming but relaxing.
Hair. After hanging on for a year+, my hair finally started falling out. My dermatologist surmised that I was experiencing telogen effluvium:
shedding of hair resulting from the early entry of hair in the telogen phase (the resting phase of the hair follicle).
Reading for potential causes, I landed on this salient paragraph:
Emotional or physiological stress may result in an alteration of the normal hair cycle and cause the disorder, with potential causes including eating disorders, crash diets, pregnancy and childbirth, chronic illness, major surgery, anemia, severe emotional disorders, hypothyroidism, and drugs.
Chronic illness, major surgery, anemia, hypothyroidism: these are all potential causes that apply!
I have a wonderful stylist, who was ready to intervene. She made me look like I had a short cut planned all along. I also see new growth at my hairline.
Thanks for reading! Look for more content and a Bun photo or two soon.
You look fabulous! I love that coat/jacket thing. Tres chic. ❤️
What a testament to your endurance and your patience. The wound care progress is such great news! And what a beautiful photo of you!