The terrible, horrible, no-good, very bad summer.

I have been dreading writing this post, hoping this health "hiccup" would be just that; however, it has turned from one week to two months of pain and frustration.  Nothing, nothing compared to what some other warriors are going through, or even what I experienced years ago.  But after have a very healthy year, and my body suddenly caving in on me.  I am a bit heated over the subject.

Rich and I were fortunate enough to go on a trip in early June that was donated to us through NJCASA, we paid only a small sum of money for six whole days on the Big Island of Hawaii, it was picturesque and surreal.  Our days were filled with breakfasts on the beach, hiking up mountains, listening to stories of the natives who lived there, and trying every single local, hole in the wall, restaurant we could find.  We hiked over miles of lava rock to reside on pristine white beaches for entire days...carrying our flippers and snorkel gear just like it was a daily accessory.  It was paradise.

The last day of the trip on the way home, I started having abdominal pain -- nothing too bad, but not good either.  The pain is located in the tissue/muscle area on the right side of my abdomen, adjacent to my hip bone.  It comes and goes with the pain ranging from One to Seven.  Thinking nothing but something of it, I scheduled a doctor appointment, which eventually led to "you're fine, but go to the ER if it gets worse." Which led to... an ER visit, with fluids, and pain meds, and then the pain was gone.  This was the third week of June.

A week later, I had to put my precious pup Lilly down to sleep.  She was fourteen, and has very well been my partner in crime throughout all of my treatments, heartaches, achievements, lonely nights and celebrations.  Lil had been diagnosed with cancer six months prior and although I was told she had more time, I could tell the decline was happening.  On July 5th, I held her till our vet put her down.  Although I've had loss, my entire world was absolutely shaken by the void that was suddenly left in me.  I was so unprepared, and the days that followed were not some of my best.

In addition, during these weeks the HL community had another devastating blow as Shea, an 18 year old absolute beauty went into the hospital due to infections and quietly slipped away with her family surrounding her. The Anderluh's are in my constant thoughts, these losses are terribly heartbreaking.

During this time, my abdominal pain returned, along with kidney pain, with it's friends: nausea, vomiting, and high-grade fevers, and a weight loss of seven lbs.   Through these weeks, the weeks I prepared for, for so long in my education the last week of internship and last two weeks of class.  I could not even move off the bed or couch, and started going in for IV infusions of fluid, thinking that the loss of Lily, and not watching my intake of fluid/food was the perpetrator.  In the early weeks of July, I had to call out of too many obligations and responsibilities and I began to realize this was more than just the loss of my fur-love.

When the fevers began to gain control, and shakes and shivers were happening I finally called my team in NYC and met with them for an assessment and scans.  With my cancer being completely stable, we looked outside the box.  My symptoms were classic Pyelonephritis (Kidney infection), and right away I was put on IV antibiotics.  Although I felt well the first week on the meds, my cultures ended up revealing that I did not have any infection whatsoever, something that we were all confused and frustrated over.  If you do not know what you're treating, and you just go on antibiotics, in the end you are only temporarily treating the infection.  So, here we were at square one again, and my symptoms began roaring back.

At first, I thought this was just my body slowly recovering since I've obviously been heavily treated; however, without the culture begin positive it was of high concern that we were looking for another infection.  With days going by and weight dropping, I made the trip down to Texas (somehow) on August 8th for the EBV+ Trial.  Oddly enough I did not have fevers that day, and was administered the drug.  The plane ride home though had to be one of the most traumatic ones I've had. At lift off my shaking and shivers began and were uncontrollable, Rich and I had packed several blankets and even wrapping me up in a cocoon couldn't stop my convulsing body. Throughout the entire trip, Rich encased my body with his arms, held ice to my head when I started burning up/spiking fevers, and ordered too many tea's too count in which our flight attendant didn't seem to appreciate one bit.  As we got home, and I retrieved my thermometer, my body was just coming down from the shakes, and it was 101.6 -- I couldn't imagine what it had been on the plane.

The next morning, this past Friday I went into the Doylestown infusion room to receive fluids or any kind of supportive care.  This, in turn led to being admitted to Doylestown where the doctors although all admitted to my sickly face that "I was above their pay grade." Suggested I needed to go somewhere else after they had ordered every single test imaginable from CT's of the body and brain, MRI, IVP, Ultra Sounds, Echo's, Cultures, and more...

The result was there is none. We have ruled out specifically: kidney infection/stones, gallbladder/stones, appendix, cancer, brain/heart issues, obstructions/stones between bladder and kidney area, twisted or abnormal ovary movement, and many others... On paper my body looks immaculate and without infection.  However, I continue to have fevers, nausea, and some vomiting.  Although the Doylestown team did not find anything, Dr. O ordered IV antibiotics to make me comfortable at least so I could attempt to put on more weight and have running fluids.

In a word, I just feel defeated. Tomorrow I travel to Upenn to see a Urologist, since we first thought this was a kidney infection, maybe she has a different opinion on what's going on, after that, I will continue with oral antibiotics.  I am feeling 'okay' not great though. The abdominal pain resurfaced after I came home from the hospital this afternoon and it is raging within my stomach, it is a struggle to eat, and I feel so incredibly weak since I have really struggled to be active in anyway.

It has been a long two months, and although I am so grateful for finishing up school (with supervisors and professors being so understanding), and our vacation in June.  I am sitting here quite perplexed.  How is it possible that  two months ago I was hiking some of the rockiest trails in Hawaii, and now I can barely walk down a hallway without huffing and puffing? The unknown is certainly a scary place to be.

As always -- I am so thankful that I am still here, no matter how much pain or the "unknown" surrounds this body.

So today, to keep focus on that...I am grateful for:

• My ridiculous supportive partner who has watched this roller coaster first hand and will always break out in dance party mode for me to make me laugh
• My mommas, who yet again this team of women are always, always there advocating for me in and out of the hospital
• Everyone who has reached out wondering "where have you been?" it's nice knowing I have so many people in my corner, I am one lucky lady.
• Our vacation in paradise, I hang on to those moments of perfection while we are in and out of the hospitals these days.

As always, I'm sure we will find the answer somewhere -- I am just hoping it is sooner rather than later.

Sending Love,

B.