Thankfully Burdened and Drained.

Thankful. 

We had a quiet yet very tasty Thanksgiving at home. Phil prepped and cooked everything. It was amazing and so good. I still felt a bit exhausted from appointments the days before. We are kinda in the revolving door phase of appointments- often going in for one, being sent to another and never knowing what fun might be in store. The drain placement was very much planned and I have to admit- I was really really anxious. It was necessary, since we were revolving into pulmonology too often to help my breathing via way of large needle poked into pleural cavity(the spot between lungs and ribs).

Phil and I argue over how many times I've been drained, technical term thoracentesis. Thoracenteses?

At the game with the Bigs. 

It's only half irrelevant since I am now the proud fashion model of a left side drain(indwelling pleural catheter). Every other night, Phil drains it and I have some relief and opportunity to layish for sleeping. And in true Jen fashion, my right pleural cavity got all jealous like and juicy and now we are draining it in office as needed. Being able to drain at home is nice, but not without issues and the placement procedure was so stressful due to my inability to breathe- that I am not jumping at adding another one. yet.

You know it's bad when the bathroom is your "sterile" zone. 

Our first  home drain solo was on the 30th and before Phil's birthday festivities. I've always been the gift that keeps on giving. It went well- despite sterile gloves not fitting and the horrendous rashes I develop from adhesives and dressings- so each change means ripping open something- while trying to keep the general area sterile. Kiera has been an amazing help getting me to appointments and was educated on dressing changes so she's been Phil's left handed right hand help and my comic relief and co christmas decorator. Lily asks repeatedly to watch, she's also been amazing at getting me to rest and giving me much needed hugs and support.

Dos. Not sure dos of what....

I think constantly of my time with my dad and am so sad and grateful for my beautiful children and their gifts. I also hate that our roles have reversed and there are so many things I just can not do.  I do not want to be a burden. I do not want the sick day memories to stick. Phillip and Bella cope differently and are very quiet. I worry. A lot. We have talked a bit about where we are at, what's going on, which is difficult because who flipping knows? So I spent time talking to each of them about the importance of family,  but also having someone else to be their person. Even better is to have people, a tribe- like my mutants. Lily totally grasped this at camp and excels at it. The gingers are quieter, more introverted- covering with some pretty funny shenanigans. They each picked a person or people, then I reached out. It was comforting and excruciating to make these connections. Gratefully our people remind me that these are the honors, not the burdens of loving someone.

Taste testers. 

As for a plan. Here's what I know. We are in what mutants call- Shark closest to the boat phase. I have multiple big sharks circling and we have to try and figure out the biggest threat before another one strikes(Halloween costume make a little more sense now?)

My sharks are the high tumor burden in my lungs, creating the fluid and overall making the ability to breathe rather stressful; big progression in my hip, which puts me at risk for a major break and me not being a good candidate for surgery due to aforementioned shark; a new abdominal node/lesion/tumor that they think is probably a sarcoma- you know just for funsies.

So the docs have been trying to find ways to determine which what is the biggest threat- my lungs decided that first....and now we've submitted genetic tests to see if I have any markers to indicate one chemo might be better than another and I failed at even attempting a biopsy because I can't lay on my back. SO I've gone from saying lets not just thrash and burn, lets be specific to saying- um guys- we gotta do something and quick- I'm drowning and there are sharks. And when there are sharks- Mutants Assemble. I am looking forward to next week being filled by 3 of my favorite sisters being here to attend to the chaos of where we are.

My future will involve icky chemo and we are weighing options and agonizing over "options" while draining all of the love and hugs I can into my family. No one knows what the future holds. A few days ago, a gunman walked onto base and took lives. Every day I am thankful Phil comes home, my children are doing ok, and I am here with them. I reach out when I can, talking on the phone is very difficult with the oxygen, so text and messaging works better for me.

Speaking of oxygen- I have Johnny 5( he's the big air compressor I use at night) and Vader- the lil loud guy who I lug around with me, thankful for the breathing.

"Jenny- I am your BREATHER!" - Trish