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…
Update 7/28
5
Author Archives: Michael C. McGreevy
Update 7/27
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.
Update 7/26
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.
Update 7/25
“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.
Update 7/24
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.
Update 7/23
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.
Update 7/22
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.
Update 7/19
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.
Information on My Upcoming Surgery
Greetings, friends and family.
If you’re reading this post, it’s because you’re one of the folks who I want to keep in the loop on the outcome of my upcoming surgery. I want to be able to keep you updated on my status while I’m in Miami, and I’ve decided to use my personal blog as the medium for doing so. Updates will be posted here, by either Lisa or myself, all using the same password I shared with you to gain access to this post. This is going to be a one-way means of transmitting data, so I’m going to be disabling comments on any of these posts as well.
I apologize for how very formal this all seems, but we’re under a tremendous amount of cognitive load staying on top of everything we need to do and process about my surgery, and we need to minimize the number of communication threads we have to keep track of through my procedure and recovery.
Where things currently stand
I am heading to Miami this week for a procedure that will, ideally, remove most or all of the tumor and part of my pancreas. My surgical team seems very confident that they will be able to complete this surgery but, if they are not, they will have had a first-hand view of the situation inside of me and will be able to predict more accurately what my next steps will be (most likely some kind of transplant).
The surgery is happening on June 17th. When I am out of surgery and we know what was done and what my recovery is going to look like Lisa will post that information here.
Many of you have asked if there’s anything you can do to help and, honestly, there really is not. We have arranged for pet and house sitters to take care of the house while we are gone, I have fantastic insurance, and Lisa has worked hard to make sure all the paperwork and details have been addressed with the hospital. At this point, it’s just a matter of waiting.
During my surgery in Miami I will only be able to have one person in the waiting room, and when I come out of surgery I will be recovering in the Intensive Care Unit so access to me is, again, incredibly limited. A few people have offered to come to Miami to be there for us, and while that’s an amazingly kind gesture it is not something we could take you up on.
I do have two favors to ask of everyone, however.
First, please don’t share the password to this blog or the information in it with anyone. I’ve been open about all of this since I was diagnosed but it’s still a very personal and difficult situation that’s not for public consumption, especially at this particular juncture.
Second, please do not reach out to Lisa right now. She is grateful for everyone’s continued support but needs to focus on all the moving parts of my care, recovery, patient advocacy in the hospital, travel, insurance logistics, and FMLA requirements to make sure nothing slips through the cracks.
We cannot thank all of you enough for your support, positive vibes, and help over the last few years. It has been a rough go, and it’s still going to be for a while yet, but I truly believe that we’re going to have a positive outcome very soon.
Thank you all for your continued love and support.
If you haven’t already, you can subscribe to my blog using the links below this post. This will ensure you are notified as soon as possible when new updates are posted here to blog. The password for all these posts will be the same.
Backstory
Because I cannot be sure who knows what about where things currently stand, here’s a brief rundown of my diagnosis, prognosis, the anticipated procedure, and expected recovery timeline.
- I have a Pancreatic Neuroendocrine Tumor on the head of my pancreas. It is 15cm by 13cm by 2cm large. It was diagnosed on July 26th of 2022. I have been through several rounds of chemotherapy and one round of immunotherapy to try and get the mass to decrease in size, but none of them have worked. The tumor does not have the proper receptors to attempt radiation therapy. The tumor is malignant, but it has not metastasized into any other areas of my body yet and I am, for the most part, asymptomatic. I have several issues going on that are very likely related to the mass, but those are mostly due to the fact that it’s just this big thing pushing on all the surrounding organs. Speaking of…
- The primary complicating factor in treating my tumor, and why it’s necessary to do so, is the fact that it has occluded (blocked) my Superior Mesenteric Vein (SMV). This vein carries blood from the stomach to the liver (so it’s, you know, important). My body has adapted and the blood is still flowing as it should through nearby blood vessels, but they are not designed for this kind of work and have grown larger than they should be as a result of doing it. Two different surgeons have deferred taking my case because of this occlusion as it’s a very risky procedure. The surgeon I’m seeing in Miami is a specialist who has been doing these types of procedures for 40 years.
- I will be recovering in the hospital for approximately two weeks, assuming the procedure goes as planned. When I come home, I’ll be recovering for several more months. This is a massively invasive procedure, and I will essentially have to rebuild all my core muscle strength from nothing.
An update – SNAFU
It’s been a bit since I sat down in front of the old blog here. This is such a common theme that it probably constitutes a significant percent amount of my web traffic. People search for “I haven’t posted in a while” and michaelcmcgreevy.com pops up to the top of the list.
That’s not true, of course. I don’t pay to advertise on Google so I don’t show up in any searches.
In any case, I wanted to take a few minutes to give an update on the state of Me for those of you who have been following along.
The last time I posted anything about my cancer was back in May of last year, and while it feels to me like a ton of changes have happened in that time frame the fact is that, for the most part, I’m personally in the same place I was back then. I still have a tumor. It’s still occluding a major blood vessel in my abdomen and it’s still inoperable. I’m still taking chemotherapy drugs to contain the tumor and keep it from growing any further, but at this point I have not seen any reduction in the size of the mass from that therapy. I’m still dealing with low energy levels much of the time and am still trying to juggle having a social life of any kind in conjunction with being completely unpredictable in terms of how I’m going to feel or how my schedule might need to change to accommodate medical procedures. The tumor is still Stage 1, well-differentiated, and has not metastasized.
In many ways, my situation is my new normal. I’ll let you decide if the “all fucked up” part of that applies.
I do have more information about my situation now, though, and if you’re interested you can keep reading to find out what the latest is.
After finding out that I was not a candidate for surgery in Tampa my oncologist at Moffitt put me on a different type of Chemotherapy called Lenvatinib. As was the routine with the combination of Capecitabine and Temozolomide that I was on prior to that, I had a CT after three months to see what changes, if any, showed up in my tumor. Instead of shrinking, the tumor appeared to have grown slightly. My doctor decided to take me off the Lenvatinib and put me back on CapTem, but before she did so she arranged for me to consult with a surgeon in New Orleans to get a second opinion on having the tumor resected or removed.
I met with that surgeon in late October, and he was as equally pessimistic about the potential of having a positive outcome from trying to remove the tumor. He mentioned that he could possibly be “convinced to give it a shot” if I was very passionate about that as an option, but Lisa and I both agreed that having to convince a surgeon to perform a potentially life-threatening surgical procedure is probably not the wisest course of action.
He did, however, suggest an alternative course of action. He said I might be a candidate for a dual-organ transplant, and he referred me to the University of Miami transplant center for an evaluation.
Things were a little hazy around this. After that meeting with him, I thought he was just talking about replacing my liver and pancreas. What I didn’t understand was why that was safe when just removing the tumor and/or pancreas was not. I also didn’t understand why my liver had to go, as the tumor is sharing a blood vessel with my pancreas and no cancer has spread to my liver yet.
I met with the surgeon in Miami last Monday, and I have those answers now.
I was not referred as a candidate for a dual-organ transplant. I was referred as a candidate for a procedure known as a Multi Visceral Organ Transplant (MVOT). The easiest way to explain this procedure is that, in essence, my abdominal cavity would be cleaned out and all the major organs and vessels in it would be transplanted from another donor as one solid unit. The only organs in that area that would remain intact would be my kidneys. The reason this is less risky to me, despite the amount of “stuff” being replaced, is that the number of tricky connections is significantly less. Instead of having to navigate severing and reconnecting many damaged blood vessels, they would be making relatively few and in places that are easier to get to/repair.
This is, of course, a major invasive procedure. I’d be in the hospital for weeks recovering, and Lisa and I would need to relocate to Miami for potentially as long as six months or more, depending on how my recovery is going. We’d need to find a place that we could move our entire family to, which includes our cats and rabbits, as leaving them behind for that long is simply not an option for us (even knowing that our friends would volunteer to feed them on a regular basis). It would be incredibly expensive, even with the housing allowance we have as part of our insurance (let’s face it…Miami is not a cheap place to live). While it would completely cure my cancer and (likely) my diabetes, I’d have to take powerful immunosuppressant drugs for the rest of my life.
If I decide not to go with this procedure, things would pretty much remain the way they are now. Chemotherapy to control the growth of the tumor, regular CT scans and a bi-annual PET scan to make sure it’s not growing and impacting other areas of my body. The big risk in that scenario is that if the tumor DID metastasize and it spread outside of the abdominal cavity I would no longer be a candidate for the MVOT. I’m also in relatively good health right now and am still considered young enough that it’s worth doing, and who knows what kind of damage I’m doing to my system while the diabetes persists.
So that’s where things stand. I’m still here. I’m still unsure of what my future looks like from one day to the next. I’m still trying to fight the good fight and keep a positive attitude about everything despite being bone-numbingly tired of all of this…mess. I’m still doing all this with my incredible partner and friend at my side, and still thankful I have her because I don’t know how I’d manage to keep my head on straight without her.
Like the sign says, I aint’ent dead yet.