The Beauty of Ruin

This beautiful, man made structure of majestic architecture, was built in the Land's End District near San Francisco in 1896.  It must have been stunning to see in person.  It is called the Sutro Baths; a privately owned, saltwater swimming pool and bath house on the edge of the Pacific Ocean.



Sadly, it burned to the ground in June of 1966.  Today, the Sutro Baths look like this.

Of all the pictures I took and places we visited last week, this was my favorite.  The sun was nearly set and the 'blue' hour was upon us.  Just a few people mingled on the beach.  We walked down to the edge of the ruins, still high above the beach below.  Our legs dangled underneath us as we teetered on the concrete wall.  The waves rolled onto the beach, steeping the sand in it's salty, watery serving of sea. Everything about this place was a paradox of beauty.  A testament to me that God does make beauty out of ashes, in a way that only God himself can do, and even more beautiful than anything man made. 

Today, the waves of sadness rolled in as a rising tide. We stood in another hospital room, feeling our world start to crumble.  I caught her tears with my broken heart and open hands, pleading for words to turn this ruin into beauty.  

First, a last minute, pulmonary function test.  It was much different than I have ever known it to be and took longer than usual.  I assumed we would get the results with the upcoming Pulmonology visit in a few weeks but the news wasn't good and he gave us the results within minutes.  Shelbie has lost about 75% of her lung's capacity to exchange gases.  The tumors and granulomas have begun to scar her lungs, thickening the tissue and the ability to move oxygen in the way it is suppose to move.  The official diagnosis is Interstitial Lung Disease.  They gave her breathing treatments but there was little change in her lung capacity.  I don't know what happens next but it blindsided us. 

We finished there, just in time to get up to the Surgical Clinic for the consultation on the upcoming biopsy.  This surgeon is the senior most surgeon at the University Hospital and Huntsman Cancer Center.  He was blown away by the complex health issues Shelbie is living with.  He showed us the CT scan from July and compared them to PET scan in January of 2016. He showed us the enlarged lymph nodes and tumors that are in question.  He and our doctor had decided which one he dared to biopsy.  It is in the very lowest part of her pelvis and extremely deep.  In 2016, the lymph node showed up as barely a spec on the monitor.  Last month it was the size of a large grape on the monitor but in reality, it's size is much larger even than that. The 'small' one they removed two years ago, was actually the size of a golf ball and this one is measuring larger than that one had ever shown up on the monitor.  

We talked a little, he gave us our options.  His hope was that Interventional Radiology would be able to slide a thin needle in and extract a core of tissue.  He left the room for a few minutes to visit with IR and get their opinion.  Several minutes later, he returned and they are not willing to go near any of the tumors.  So, our only option is to cut her open.  He reiterated several times how risky and serious this surgery will be.  The incision will be over 6" long.  He will have to move all of her muscles, ligaments, organs etc from the right side, over so he can get to the lymph node in question.  It is sitting right on some major arteries.  He said, "I'm willing to do this.  I'm familiar with the incision but you need to prepare yourself for this surgery.  It's BIG but let's get it done." 

Everyone was in agreement and it was decided that she would be cut open and we would face this risky surgery and hope for the best. 

I'm not sure if it was panic or shock or the spirit but I couldn't go through with this.  I wanted to call the whole thing off and just let it be whatever it is.  I said, "Wait.  What if this isn't hypermetabolic?  What if this isn't even 'hot' and we get it out and it's just an enlarged lymph node for whatever reason?  Then what?  Then we have to open her back up and go after the ones in her lungs or around her heart?  What then? And then we've removed a lymph node she has to have  for that struggling lymph fluid" 

So, a little back story...The PET scan she had in April was messed up because they used the wrong tracer.  Instead of using the tracer for Lymphoma, they used the tracer for Carcinoid Syndrome, a completely different kind of cancer.  Even though it showed startling levels of metabolic activity in these lymph nodes and granuloma tumors, they won't use that test for diagnostics...so that is the big problem.  A plain CT that she had 3 months later doesn't show which areas are "HOT" or in other words, considered cancer because of the metabolic activity.  It only shows the enlarged size. 

The doctor was a little surprised that I had blurted that out but he agreed with me.  "You're right!  You are absolutely right.  We have one shot to reach our target and we can't miss it.  Let's redo the PET scan and measure the metabolic rate of these areas.  If it's 'hot' we go after it.  If it's not, we meet with your oncologist and decide the next best one to go after.  Honestly, you better pray it's hot because if I have to go to any of the other areas..."  It's dangerous.  That's what it is.  Risky and Dangerous and life threatening. 

We could do nothing.  We could just watch these things continue to grow.  Either they are granulomas or they are lymphomas and the only way we will be able to tell is with a biopsy.  If they are cancer and we do nothing, she will certainly die.  She has lost 24 pounds in just over 2 months.  If they are granulomas, there is nothing they can do to stop them but some chemotherapy drugs will slow their growth and give her more time but her lungs are in much worse shape than anyone realized due to these tumors that have sat in there for 3 years now.  Honestly, a granuloma diagnosis is the worse scenario.  If we want to treat her, we have to do this surgery so we know what we are dealing with. 

This has been by far the hardest thing I have had to face.  There are no easy answers or solutions and without a doubt I am out of my league.  This has to be completely determined with Faith.  We went around and around, visiting various scenarios, weighing the pros and cons.  The other complex part is that her right leg is already over 3" larger than her left in diameter because she is not able to move lymphatic fluid properly.  Taking out that lymph node that is so huge is going to aggravate an already complicated situation.  

There I sat, trying to look brave and strong and capable; with a Faith that no mortal could possibly possess.   Shelbie looking to me with tears streaming down what looked like her little 5 year old face, to make the decision on how we move ahead.  My Wasband looking at me to make the decision he didn't dare to take responsibility for and the surgeon saying, "Mom?  I'll do whatever you think is best."  I was pleading for Heavenly Father and what Angels I was hoping stood by, for an answer. A clear and certain answer but nothing came.  I recognized that nothingness feeling.  I've felt it before. 

I stood in a ruined mess of mortality.  I heard in my mind the question Shelbie asked on the drive down...Am I God's mistake?  With every heartfelt pleading for God to just answer me...he gently said, "It doesn't matter what you decide, trust me."  So, not with renewed faith, but rather my thin and frayed faith, I said that I want a PET scan first.  If the target is hypermetabolic, we operate.  If it's not, I will decide what we do next.  

With confidence, the surgeon said, "I would have made the same decision.  To make sure you don't spend more time with this hanging over you than necessary, I will schedule surgery as soon after the PET scan as possible.  If we cancel the surgery, it's not a big deal to me but it's important we have it scheduled."

Shelbie's PET scan will be next Friday with surgery to follow on Monday- if it is in fact, hypermetabolic...By the way, everyone thinks this is the right one to go after but me, I'm not sure I have made that clear.   

It's a hard day but we are going to move ahead with faith and watch this unfold.  I mean, when I'm not freaking out, it is an interesting way to live and actually quite fascinating to see the works of a merciful and loving Father in Heaven.