Apologies for the lack of updates in the last week or so. I’ve been readjusting to life at home and getting things settled back here and just haven’t had the occasion to sit down and fill everyone in on what’s been happening. On that note, this is going to be my last password protected update about the cancer situation. Which, really, is a good thing. There’s not much to tell.

I got home late Sunday night (the 28th). The ride home was a bit of an adventure. We decided before I went into the hospital that we’d get a transport service to bring me home. While we were in the hospital we asked social services to help us arrange that. What we thought we were getting was a private ambulance. What we ended up getting was a van that holds a stretcher driven by two guys with no medical background whatsoever (one of whom was on his fourth day and the other spoke absolutely no English, which was fine with me but his non-Spanish speaking partner was having some issues with it). The ride was uneventful, even somewhat interesting (they took a route through some really wild small towns in the Everglades area that I had no idea existed), but by the time we got home I was very much done with that adventure. Fortunately, Lisa left Miami several hours before I did and she had the house ready for my return, so really all I had to do was walk in the door and go straight to bed.

I have spent the last week or so recuperating around the house. I’m seeing a wound doctor here in St. Pete to monitor the progress on the part of my incision that they had to open during my stay in the hospital, and that is healing well. I also have a home health nurse coming out twice a week to replace my dressing for the vacuum device that is keeping the wound dry. I’ve had follow-up appointments with my endocrinologist and will be seeing my primary care physician soon. My endurance is increasing, and I’m able to move about for longer periods without getting winded. I’m learning how to eat again with my new and improved smaller stomach and lack of pancreatic enzymes, and I think I’ve finally gotten to a point where I can do so without getting stomach cramps (I’m now officially in the “eat small meals throughout the day instead of one big meal” club). I’ve also dropped most, if not all, of the water weight that I brought home from the hospital (I was 268 pounds when I got home…I’m 230 now, which is about where I was when I went in but I suspect my “actual” weight is going to be lower and I’ll see some more water weight shed off this week).

All in all, things are very good. I’m sleeping better, eating better, more mobile and in less pain. I’m incorporating more of my daily activities back into my life, and I’m looking forward to continuing to do so. I haven’t had to worry about pretty much anything other than healing because Lisa has been making sure that nothing falls through the cracks and I have everything I need, just like she has throughout this entire process.

Thanks for caring and reading and your comments over the last two months. I didn’t respond to hardly any of them, but I read them and took comfort in knowing there were people who cared and were invested in a positive outcome on my part.

We are heading home.

Everything finally fell into place today and we should be heading out in the next few hours.

There is a lot more to tell, but for now that is the important news.

57 days…

Not much to say, really. Other than we are very frustrated.

As I said yesterday, I am cleared to go home. The home nursing was approved by insurance and was the last hurdle to jump. Problem is, we cannot find a home nursing service that will come to the house once a day a to, essentially, look at a dressing.

Social services is working with my doctor to see if he will change the order. In the meantime Lisa and I did some research and there are several outpatient wound care facilities in St. Petersburg that should be able to do the appropriate maintenance on me going forward.

I am not optimistic that this will be resolved tomorrow, but…Maybe Monday?

I am very sick of maybe.

It has been a roller coaster of a day.

I am, essentially, discharged from the hospital. I have the equipment I need to take home with me, my IV meds have been switched to oral, and my insurance company has approved the home nurse to tend to my wound vac.

But that is where the road block occurred. The nurse will have to visit within 48 hours of my return home. Lisa has been working with the social workers to find a service that can accommodate that, but so far nobody can. So until they do? I am here.

While the social workers do work over the weekend, I cannot help but feel as though they are not going to find anyone before Monday.

To say I am bummed out would be an understatement.

Still, home is a matter of days at this point instead of weeks, so I can manage through a few more.

“I want to get you out of here on Saturday.”

A quote from my doctor this afternoon. I think he is being optimistic but we shall see. We are still waiting for the home health care items to be approved but realistically I can go home without most of them and let them sort out the orders next week.

Had a final CT scan today and all the fluid collections in my abdomen are gone. I still have extreme edema which should start to go away when I can exercise more (getting walks in here has been a challenge).

I still have a lot of recovery to do but if all goes well I can start doing that at home very, very soon.

Insurance continues to be a road block. After the peer-to-peer meeting they had yesterday my team is not convinced that they will approve the acute rehab. Lisa filed a personal appeal this morning but it seems highly unlikely I will be going to the rehab center.

So my team has started the process of getting me home, where I will have to go to outpatient therapy and have a home nurse come visit to help with IV meds (if they send them home with me) and the wound vacuum.

Best case scenario a decision will be made one way or another by Friday and I will be coming home before the weekend. If it doesn’t, I will almost certainly be here through the weekend.

They are finally moving me off of the ICU and to a private room on the medical floor. I will have more freedom of mobility there (in the ICU you have to stay connected to monitors 24/7), and will hopefully be able to sleep better.

I am frustrated, but thankful that I should be out of here in some fashion in the next week.

Movement again today, but I am still in the hospital. The next step in the appeal process to my insurance company has been completed (a peer-to-peer review between one of my doctors and one on the insurance side) and now we are waiting on a final decision.

I have been working with the physical therapy team here to improve things as I can, but I would be making much better progress if I were in rehab.

Beyond that? They took the last two drains out this morning. The only thing I have left attached to me is a wound vacuum, which I am probably going to go home with regardless of when I get there. I am on IV antibiotics still warding off the last of this infection, and the edema I have had seems to be largely under control.

I still have a lot of recovery left to do, but I am getting there.

As expected, nothing at all happened over the weekend. My discharge to acute rehab is currently stuck in bureaucratic limbo, and Lisa is working very hard to coordinate and push people to get things moving. Meanwhile I am doing my best to do what exercises I can while confined to a chair and keep myself occupied.

Hopefully we have some solid movement and timelines by the end of the day on what my next steps are going to be. Until then, I continue to appreciate your support.

Hi friends and family. This one is actually coming from me for a change. I am feeling well enough that I am going to be making updates for the foreseeable future. And on that note…I am probably not going to post every day, because where things stand right now is pretty much the same thing on repeat.

I am still in the ICU while they continue to drain excess fluids from my abdomen. I am well taken care of and getting more and more strength back daily. The process of transferring me to acute rehab has started and is in the insurance approval stage. Maybe that happens over the weekend, but I have my doubts.

So, yeah. Unless there is a significant update I probably won’t post much here in the upcoming future.

Thank you all so much for your messages and support. Lisa kept me in the loop on all of them when holding my phone was too much effort and it means the world to me. I look forward to seeing you all soon.