It has been ROUGH.

A LOT has happened since my last post and I know I'm not going to be able to put everything here, I'm sure I'll forget details and it's just . . . a lot. This might be a long post. I'll just preface this by saying that Jess and I have spent entirely too much time in the hospital these past two months.

It started with a new chemo cocktail - Docetaxel - which has absolutely wrecked me through two treatments so far. This is a HEAVY HITTER. After the first treatment, I was having some major pressure in my chest and noticed that I was getting out of breath easily. Walking up the driveway winded me! I had a scan scheduled that week (chest CT Scan) to see what the status of everything was and the nurse told Jess and me that we couldn't leave yet; that there was something she needed the radiologist to review. Turns out that the pleural sac on my left side was about 90% full of fluid.

If you already didn't know, there is a protective sac around the lungs called the Pleural sac. With all of the fluid in there, my lung could not really reinflate. We went to the hospital in Winchester, who was equipped to handle what needed to be done: a thoracentesis. This procedure involved putting a needle in my back, into the pleural sac area and draining the fluid. I was in the hospital for two days and would have a total of three thoracentesis. The first time they drained 1500 ml, the 2nd time, 2000ml, and the third, 2500 ml. The average adult carries about 10ml of fluid in that area, naturally.

The plan was for me to "listen to my body" and see when I needed to go in for another thoracentesis. But at the same time, it came back that the reason this fluid was building up was because there were now malignant cells in the pleural lining. The cancer has spread to outside my lungs. Yeah, that's not good. So, the trouble breathing, the pressure, the problems kept piling up quickly as the fluid rapidly accumulated. We decided to push for another procedure, one that would not have us driving to Winchester (over an hour away) every other day for a thoracentesis. We inquired about a Pleur-X catheter, which is a small tube that gets surgically inserted into the pleural space and then, with these "at home drain kits" you hook them up and drain it yourself. We thought this the best solution, and one that would allow us to manage the situation. So, back to the hospital for a three day stay. More draining and the catheter was put in. We did a few drains at home, even had some help from an in-home, visiting nurse. Everything seemed like it was under control.

It should also be noted that this chemo knocks my white blood cells and neutrophils down to almost zero. I become very susceptible to anything and have to be careful. It also did what no other chemo did: took my hair. It was coming out in literal chunks. Facial hair started falling out too.

And then I had my second treatment. A couple of days after treatment, the floor dropped out from us. I wasn't feeling great and so I went in to the bedroom to rest. I was in an incredible amount of pain and felt so much pressure on my chest. It was agonizing. We decided to go to the hospital, again. We didn't know it at the time, but my blood pressure had dropped to 52/?. That's DANGEROUSLY low. That's the kind of low where people code, have a heart attack, etc. Somehow, with Jess's help, I was able to walk to the car still. Somehow I was (mostly) conscious.

It turns out that the Pleur-X catheter was infected. I had sepsis. My blood pressure would not improve. My counts had plummeted. This would put me in the hospital for a week, including some time in ICU. It was there, in ICU, with things looking very grim, that Jess and the oncology team decided to do a pleurodesis. This procedure takes the pleural sac and actually sticks it to the side of the lung so that the fluid cannot build up in it.

They did the procedure and, while they were in there, they cleaned out some of the infection and found something else interesting. The pleural sac had formed little walls, little pockets, where that fluid could not get to the catheter. The catheter might drain the fluid from the area it was in, but these other places were isolated and filled with fluid. So, they tore down those walls, got rid of all the stuff in the way and then stuck my pleural sac to the side of my lung.

After the procedure, you have a large drain tube connected to a box that lets everything keep coming out. That's its own incision site, and then there's one for where they went in with the tools and scopes and such. Sometime during that week, they removed the Pleur-X catheter. I had IVs and HEAVY antibiotics pumping through me 24/7. More meds than I can recall.

And the drain site incision kept leaking A LOT. I'd cough and it'd be like a Loony Toons cartoon where Yosemite Sam shoots someone all up and they drink water and its spouting out of them from a dozen holes, lol. Before letting us go home, a week later, the surgeon put three more staples in my side to hold the leak. Didn't work. She put three more in. Still leaking. Then she put medical superglue over it all. It seemed to stop it for a bit, but when we got home, we still had major leaking problems. With gauze and tape and pressure, we tried our best. It's finally under control now and on Thursday I'll be going to have the staples removed. That ought to be fun, especially since they're under glue. Especially since they don't give you anesthesia.

Another problem was/is the THIRTY pounds of water weight I put on from the hospital. I was SO swollen. I am still swollen. My ankles and knees and feet are ginormous. With all of that fluid being pumped in, and all of the steroids keeping it in my body, I came home as the StayPuff Marshmallow Man.

Another thing I've been struggling with are esophageal spasms that make breathing, talking, and eating difficult. We've added a couple of new meds to the mix that seem to be helping with that, but not completely.

So, recovery has been slow but steady. I'm taking an arsenal of meds. We have a blood pressure cuff and a pulse ox at home now. We have an appointment with oncology tomorrow where we need to ask some hard questions. We're uncertain of what is next, what the plan is, what lies before us. I'm not sure I can take another round of Docetaxel. Not sure what will happen with the malignant cells around my lung. Not sure if the pleurodesis was completely successful (it has a 75% success rate) - but we should know on Thursday after we meet with the surgeon and after the X-ray. We're scared, and tired, and frustrated, and beat up. We're worn out, stressed, and dealing with a lot, physically, emotionally, and mentally. We've had some very difficult conversations and have to face some potentially dark truths. We've cried a lot.

I know that many of you who read this blog, also read Jess's Caring Bridge posts. I wanted to thank all of you for your overwhelmingly generous help when we needed it most. With all of this time in the hospital, Jess has not been able to work that much (her pay is hourly, and invoiced) and so our income dropped. Gas adds up when you're driving back and forth a gazillion times a week, and hotels, and medications not covered by the VA, and the bills are still there. People always ask how they can help and this time, Jess said well, we can really use gas money, right now. And so many of you sent her money to help. We're both immensely grateful. You really helped us out. And your thoughts, questions, outpouring of love and support has made a tremendous difference. So, thank you.

Still smiling in spite of it all

Jess got me out for a short walk and some sunshine yesterday. It was the first time in a month since I was not either in a hospital bed or couch-bound.

So there you have it. That's a lot, I know. I'll post again after we meet with oncology (tomorrow) and the surgeon (Thursday). In the meantime, much love to you all and thank you for reading!

• j