Monday, March 13, 2006
Transitions (or, Aftercare Blows)
When cancer strikes, suddenly your focus shifts from plans for the future to simply getting through the present. Prior to my diagnosis, I was enjoying my career, beginning to develop my consulting services, and planning on purchasing a home. Throughout treatment, I focused on checking items off the list: each chemo infusion, surgery, and each agonizingly long step in the reconstruction process. With only minor reconstruction details left, much of the journey is behind me and with each day I become more comfortable thinking about the future.

This in itself is a big step in healing. Letting go of the day to day survival mode and thinking about my life in terms of the moment AND the future, can be a challenge. It is difficult to let go of the "fight" and know that it is okay to not be doing anything actively to fight cancer. With each three-month check up I cautiously begin to believe there is indeed no evidence of disease.

Of course getting through the day is also a challenge as it seems new issues continue to pop up that are a result of the chemo. The most significant one is this awful persistent itchy rash that was once contained to the top of my feet but has traveled upwards to mid-calf. I have researched and researched and talked to my oncologist, but nothing definitive has surfaced. My primary care physician is puzzled as well, but at least willing to entertain the results of my personal medical research. I am once again on steroids (a topical cream) to get the inflammation down and keep the itching at bay. It keeps the symptoms under control for now, but the problem still exists. Of course, the steroids cause hyper pigmentation so it is beginning to look like I am wearing tan socks, but what's a little physical disfigurement when you have 30 inches of incision scars.

Lymphadema has become a real issue for me. The best part is how my insurance provider responds. I have been fitted for a compression sleeve; however, my insurance has not given the final approval so three weeks later I am still waiting. I was also referred for physical therapy. Scheduling the appointment was a challenge and took three attempts. The last time they called me back to let me know they would bring in a lymphadema specialist just for me, but I would need an evening appointment. I called to confirm a few hours before the appointment and everything was scheduled just fine. I got there and was informed that they could not negotiate a cost-effective rate with the specialist, but they have someone on staff who knows how to use the equipment. I left. My doctor has put in a request for me to be treated elsewhere, but the approval has not come in yet . . . four weeks later. Something's gotta give.

These may seem trivial in comparison to going through chemo and everything else, but it is these lingering issues that impact my lifestyle and ability to move forward with my life. I am constantly juggling issues that don't get an immediate response from the doctor or insurance provider. I have to fight for everything whereas during chemo, I only need pick up the phone and anything I needed I was granted quickly. Now I have issues that the oncologist doesn't cover and the primary care physician is unprepared to address. Aftercare blows. I feel unqualified to be the one managing my care, but this, sadly, is the American healthcare system.

In the meantime, my gracious landlord who has only once raised the rent on my townhome since I moved in nearly eleven years ago, has decided it is time to move his ailing father in and me out. I had put off the house hunt upon my diagnosis; however, the convenience of living near my office and ridiculously low rent have made it comfortable to stay. Sometimes you just need that extra push to get into the housing market. In fact, I made the purchase the very next day after receiving the notice (Was I actually evicted? What regular rent-paying adult actually gets evicted?). I am officially in escrow on a home I love. It has wonderful light, great use of space, and wonderful features. The best part is that it is right around the corner (literally a few doors down) from my sister where I spent my time recuperating from treatment and surgery. I do not think it is coincidence that the place where I spent time recuperating will be part of my ongoing healing and a fresh start. It really is time to move on.
Written by Jeannette Vagnozzi
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Name: Jeannette
Location: Southern California, USA

This is my story about being diagnosed with breast cancer at age 39. I thought I was out of the woods, but four years late it came back. This is my quest to be a two-time survivor.

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