I decided in honor of my 4 month anniversary (May 9) of the installation of the “window” in my side, I would reflect on how life is with a window-for those of you who haven’t gone through such an experience.
(For those of you who are playing catch up, I was diagnosed with a long-term serious mycobacterium kansasii lung infection last summer (that I was susceptible to due to a damaged right lung from previous cancer radiation and treatments). I took strong oral antibiotics for 3 months and then things took a turn for the worse which led to having my right lung removed in November. Seven weeks post-op I developed a very serious complication called a bronchopleural fistula in which an infection developed in my chest and ate a hole through the stump covering where my lung used to be. As treatment, I had surgery to install my "window" which is an open cavity in the side of my chest-where 2 parts of rib were removed. Since that surgery, during the week, I go daily to the surgeon's office to have my dressing changed and on the weekends, rely on home care nurses or family to change it. I should be having my next (and hopefully final) surgery mid-June. A recent CT scan showed things looked "as expected" and my remaining lung appears to be stable (I continue to take high-powered antibiotics to treat the original m. kansasii infection).
Now onto my list about living with a "window"...
- For entertainment value, I get to experience all sorts of unfiltered reactions and comments to this bizarre opening in my chest, like when a seasoned nurse blurted out, "This is the biggest cavity I've ever seen” and seemed scared.
- Flying is clearly out of the question. As one friend put it, "If the luggage shifts in the plane, imagine what your insides would do in the turbulence."
- Beyond the health risks of flying, daily hospital visits and at-home nursing are required to keep the cavity clean, leaving me physically tethered to my hometown, and unable to work. This is positive, though, as it leaves more time for staycation activities, from concerts to systematically knocking off the top 100 restaurant list. Staycations are ridiculously underrated anyways. It has quickly become the “Year of Doctors, Concerts and Restaurants and New Experiences”.
- There is nothing like the feeling of a freshly packed chest cavity. Seriously, you should try it. When the gauze is removed temporarily, there are whistling noises and it makes it hard to catch my breath. The process also resembles that of a magician when he/she pulls out a never-ending scarf.
- I treat our loft like an art gallery, taking each opportunity to show off my artwork to fresh-faced home care nurses. I've contemplated throwing a price tag on the pieces and seeing what happens.
- At the hospital, I'm able to live the life of a "celebrity", which in the medical world simply means I know everyone from the valet team to the nursing staff (even when I have never used the valet services).
- I always have to be prepared for a leaky window, which means that the standard items in my purse consists of medical napkins and tape. I also have to be alert as things have almost gone into the “window” that are not supposed to such as my niece’s head and the corner of a cabinet.
- The standard shower items are even better, as they include Press n' Seal (mine happens to be Christmas-themed) and plastic tape. I must strategically schedule each shower around someone else's schedule.
- Fortunately, I have the world's best whoopee cushion, with the ability to create undercover farting noises. Although, I fear the day I'm in public, like in an elevator, and have to try to explain to a stranger where the noise is coming from, or act like it didn't happen.
- Unfortunately, I'm subjected to endless window references and jokes, such as "window treatments", "window to my soul", "come to my window", and "If a window of opportunity appears, don't pull down the shade” and even “an opening to Narnia”.
A huge thanks to everyone that has been a helper or supporter throughout everything! I am so grateful for Gabe, family, friends and medical staff along the way!