Ups and downs

I tell ya,  this is a very hilly portion of the journey. High highs and low lows.

I actually hurts to write this post. I’m so tired of having people worry about me.  I can handle shit happening and get through it, but ugh.  I can barely emote aside from making a gagging sound of frustration.

I had the ct scan with contrast the other day. Finally.  It was in the morning, and I had to take my car in afterward,  so Jeremy followed me there, and we went to breakfast after dropping off Cassius. We rarely go to breakfast,  but I found a place in bend that does gluten-free waffles. I haven’t had a waffle in a long ass time, and I was excited about it.

It was a beautiful day,  a beautiful place, and the steam was rising up from our coffee as the sun shown off the plants inside. I had one of those moments of presence,  and gratitude for all being alive.

The report from the ct scan came back with some alarming information. It’s always confusing though,  those reports,  so I’ve learned not to freak out until I hear from a doctor. Or in this case,  at least one of five of them that requested this test.

We spent a few days in a bit of a frenzy.  Not sure where to go or who to turn to. We don’t have one place or person to go to for answers.  So, after a few days of cobbling together information piece by piece,  on each of the varying parts of my body,  we are, frankly,  a bit devastated and annoyed.

We went camping this weekend, bringing Mckenzie to her namesake river.  We got the call from the surgeon, miraculously,  since we can’t get any data,  while sitting next to the river I visualized cleansing me.

There is still cancer in my chest.  It has grown about a millimeter in 6 months.  Very. Heavy. Sigh.

The surgeon said they must have missed one of the lymph nodes.  Interestingly,  that isn’t the worst of it.  There is some blockage in my lower left lung. It’s not fluid,  but possibly some kind of infection or general blockage.  He thinks I need to address this first and he doesn’t think it’s treatable with antibiotics (which was the original plan from the pulmonologist). He recommended I get a Broncoscopy.  I’m in one of those games where I’m having to weigh peoples’ opinions when I don’t understand all the information.

I messaged my local pulmonologist again with that info to weigh the options. In the meantime,  since I still have insurance through my old company,  I’m going to try to see if I can get the other surgery through them before I lose it.  It’s a long shot, but I’m going to try.  The surgeon thinks it would be a robotic arm surgery through my left ribs. One night in the hospital. So, it’s not that bad, just very mentally disappointing.

The endocrinologist also thinks there’s a chance of treating it medicinally,  but they don’t do it in my area and so she sent a referral back to OHSU in Portland.  It takes them two weeks to even process the referral, and from there, I have no idea how long it will take to schedule.

Here’s what I find annoying about the whole thing (granted there are Apr but these are the most bothersome for me. ) The data doesn’t add up- I’m an analytical thinker, and I like to use data to make informed decisions.

• My tumor makers were low.

• The doctors said they got it all

• The pet scan did have one spot, but the endocrinologist said that was normal

Alas.  It’s like this now. 

I’m trying to sort out what to do next and when but none of it is in my control right now. I’ll strategize to the best of my ability and all and plea with people for help… and empathy. This constant rigor is always going to be a part of my life and all I can do is the best with what I have. 

And then there’s this. My adorable little family,  together, camping. Mckenzie had her first winery and beach experience.  I’m full of joy.