You may encounter many defeats, but you must not be defeated. In
fact, it may be necessary to encounter the defeats, so you can know who
you are, what you can rise from, how you can still come out of it. -Maya Angelou
There is so much on my mind and so much I could write about. My current daily world involves a lot of patience and wondering. Parts of my recent post, Living Life on the Edge, has hit home sooner than I would like to admit.
A couple weeks ago, while on my "relaxing getaway", I ended up in the emergency room. I had 2 days of relaxing enjoyment beforehand. The physical symptoms were sudden and unexpected. I was visiting an amazing fellow sarcoma survivor friend in New Hampshire. Her daughter, her and I were sitting and enjoying dinner and some ginger tea when I started coughing/choking on large amounts of sputum. At first, I wanted to believe that maybe it was leftover from a mild cold I had the week before. But there were large amounts of junk coming out of my mouth and reminded me so much of when I'd had a fistula in January. Then came the odd squeaking and wheezing noises inside my chest from where my lung used to be-things did not feel right. I was hoping never to hearing the crying sound coming from my chest ever again. I took a shower to try to calm down and think through what to do. One of my fears has always been to be on vacation and have to go to another hospital, where no one knows my medical history or anything about me (I know that I have always been somewhat coddled where I am treated). I called my husband and he said I should call my surgeon. The doctor called me back immediately and said I needed to get some tests done at a local hospital and see if I could make it home but we were all still thinking that hopefully something else going on.
It was what I think of the typical ER experience being like: long and slow waiting all night but not enough time in between to actually sleep at all. Ironically, I had never been to the ER (because of my aforementioned doctors, any hospital stay meant I was whisked through to a private room when needed). It was a teaching hospital and so with my extensive history, I was quite the spectacle for the residents and senior doctors. I was different and fun at first-a patient with rare issues who knows what they are talking about in depth (even having copies of x-rays and blood counts on my phone). As the night wore on and they realized something was really wrong, the mood changed. They seemed to want to get rid of me and send me back to my regular doctors. We had lots of mixed messages throughout the night of internal bleeding, pneumonia, bronchopleural fistula, etc. In the end, I was cleared to fly home with uncertainty about what was going on and a CD of my x-ray and CT (but I knew...I knew in my heart it was another dreaded fistula...as my doctors had told me before-you just know when you have one because the symptoms are so unique).
Getting home was overwhelming to think about: I had 2 flights, luggage, had pulled an all-nighter, was coughing up large amounts of gunk and so weak. My truly amazing husband actually flew from St. Louis to New Hampshire, drove an hour to where I was staying, got there at midnight and flew back with me the following day.
Since getting home, I have had some testing done where the fistula and infection causing the infection have been confirmed. This was truly something that should not have happened...everything had been done to prevent this, but me being typical me, it somehow became possible and happened. So, now it is up to my doctors to get creative once again...I feel for them as I know my options are wearing thin. I also trust them enormously to be honest with me about whatever the future may hold.
In the meantime, I don't feel horrible for the most part, I lay low, I read, I hang out with Gabe and a few friends and family and pray and wait and prepare for whatever comes...
Rachel
