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...




 Do not give up; the beginning is always the hardest.  
-Fortune cookie (on our fridge)

What does recovery from 3 major surgeries in 8 months, some massive infections, one remaining lung and a large open cavity in my chest for 6 months look like?  Recovery did not end when the surgery was over or even when I left the hospital...it has been an ongoing daily journey for the past 3 months, especially compounded by previous issues and many years of health conditions and treatments that complicate my situation.  When people ask how I'm doing, I say I'm doing alright AND (sometimes say) I'm really good at "playing a healthy person".

While it would nice to just magically heal and move on, I have to remember my body has been through a lot, my chest was reconstructed and I will never quite be the same again, coupled with still actively being treated for my original lung infection.  Sometimes my mind needs to have some patience with my body.  My brain can be ready to go, go, go and do, do, do when my body just cannot but it does do quite well!  Or other times (not as often) my body is feeling more energy but my brain is tired.

I am doing many things to help the process such as physical therapy (PT) (and have found an amazing integrative practitioner who incorporates massage and yoga), trying a few new medicines, yoga, walking, trying to eat more foods to support healing (winning 10 free meals from a place with healthy to-go meals with a lot of healing protein was a huge help, especially on days when I do not have a lot of energy) and trying to enjoy life until I work again.  I try to fill my days with a balance of interactions/activities with people or things that enrich my life and downtime to recharge and refresh (but usually it's more top-heavy on the "activities"). 

It has also been a time to address issues that have come up in the past year that were "put on the back burner" with the lung issues front and center.  This, too, is part of my healing and trying to do all I can do to feel the best I can.  I have transferred to a new practitioner for some issues and now have 5 main doctors, a specialized physical therapist and a specialized massage therapist in my court.  I feel like I have the best "team" in place and so many amazing, skilled people helping me and I am so grateful for all their time and expertise.  With having previous chemotherapies that are known to cause heart damage (short and long term) and the strain that having one lung causes the heart, I recently had my heart tested.  While it has some reduced function, it is still on the lower end of the "normal range" and does not require immediate attention. I'm off the hook for another year barring any other issues.  Yay!

Already I can see a decrease in pain (evidenced by small things such as just a few weeks ago I was holding and supporting my whole arm with my other arm while taking long walks and now being able to walk "unaided") and decrease in overall bodily tightness.  My intestinal tract is even slowly starting to heal and my appetite is slowly returning.  Things are looking up!  It takes looking at all the little improvements to realize how far I have come and not get caught up in all the little day-to-day frustrations!  I have also managed to do well on 4 flights-to and from the big city (NY) and 2 (here and back) for a little beach time (FL) with another relaxing trip planned soon...I wear my colorful antimicrobial mask (see below) for flying and so far, it has kept me healthy.

Grateful for all these blessings and trying to live life to the fullest!!

My mask for flying and other "suspect" air conditions...