An update – SNAFU

I atent dead
Image generated by OpenAI’s Dall-E.

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.

A Con of Dragons

After I returned home from DragonCon in 2019 I decided that I needed to re-evaluate my relationship with the convention and whether I would ever go back. I had cut the trip short due to an impending hurricane and a general sense of misery and unease being there.

This was about a month before I quit drinking, when everything I did from a leisure standpoint basically revolved around alcohol. I started drinking when I got on the plane for Atlanta, and really did not stop (except for the morning hours and the times I was on duty…mostly). I was already at a point when even leaving our house was annoying because it just got in the way of being able to drink as much as I wanted, and when you factor in the cost of travel AND the expense of drinking hotel priced booze? Well, it just was not worth it.

This was, honestly, how many of my vacations looked before I stopped drinking. Just an excuse to drink even more than I did at home. I had a similar experience at Gen Con earlier that year. Skipped out on the final event in the tournament that Alexander and I pretty much went there for so we could stay at the AirBNB and drink.

The fact of the matter is, though, that when I first went to DragonCon I hardly drank at all. I could not afford it, for one thing, but more importantly drinking was not a big deal in my life. What thrilled me was the convention itself, and the things I loved doing there had nothing to do with getting my drink on.

I had already decided to take 2020 off so I could really sort out my feelings on the subject, but then the pandemic happened and I had another level of emotion to sort out. One of the reasons I loved going to conventions is because they made me feel connected to people who shared the same passions I did, or who were equally as passionate about things I was not but could at least relate to. Being cut off from that while also being cut off from pretty much the rest of the world made me miss attending the show even more than I would have had the pandemic not happened, so I went ahead and made a reservation for the 2021 show and committed to going.

Now it is just a few short months until DragonCon returns, and I am following through with what I told myself I was going to do and sorting out my relationship with DragonCon. A relationship that will not, for the first time in a very long time, revolve around (or even include) drinking. Why do I want to be there? What do I want to do?

Seems like the perfect occasion for a bulleted list…

  • I want to see and spend time with the friends I have made, and only see, during the convention.
  • I want to dance. Preferably while looking spooky.
  • I want to see and take pictures of cool cosplayers.
  • I want to have dinner at the restaurant owned by Kandi Burruss (Old Lady Gang Southern Eatery)
  • I want to play some games. This could possibly include running the 5th Edition D&D module “The Lost Tomb of the Bitchin’ Chimera”
  • I want to stare forlornly at the vacant spot where the GLC café used to be and dream of the falafel I will not be having. Ok, I do not WANT to do this, but I will.
  • I want to buy a new kilt that fits properly, get my kilt belt sized down, and purchase some new t-shirts.
  • I want to express my gratitude to as many artists whose work I have enjoyed in my life as I can fit in my schedule.
  • I want to sit in a room full of loud, exhausted volunteers eating food made from questionable ingredients while trying to hear whether I have won a raffle prize I will never be able to use.
  • I want to resist the urge to break my streak of walking four miles a day.
  • I want to play and possibly purchase at least one new game.
  • I want a cool new coffee mug.
  • I want to go to karaoke.
  • I want to discover new and interesting beverages to consume that are not alcoholic. Craft Sodas!

I could probably think of more, but if I were to accomplish everything on that list it would be a hell of a holiday weekend. Which is exactly what it used to be like back before having a drink in my hand the whole time was not my priority.

See you in Atlanta, Geeks.

Pictures

13043_180464084665_5355595_nIf I was put on the spot and forced to choose, I would have to say that the picture here on the right is my favorite of all the pictures that have been taken of me in the last few years.

 

My mother took it a few years ago when we were spending a family weekend out at the Tradewinds resort on St. Petersburg Beach. It was one of those “snapped it at just the right time” pictures, as I looked up right as Mom took it. I’m comfortable, relaxed, not posing, and…thin.

Well, about as close to thin as I’ll likely ever be.

I don’t like the pictures that are being taken of me these days. I don’t like them because they are evidence of how far I’ve slid since that picture was taken. They are reminders of the fact that I’ve stopped running, hell that I hardly ever get off my ass to exercise these days. They are evidence that I’ve stopped paying close attention to what I eat, and I’ve gone back to my habit of twos (always ordering two of something, always have seconds, etc…). I don’t like them because they show, indisputably, the 60 pounds or so I’ve put on since it was taken.

I’ve talked at length about all the excuses I have for the weight I put on, my health “problems” being the primary culprit. I put “problems” in quotes because, really, the things that I’ve dealt with have been more annoying than anything else. I haven’t been incapacitated, just…inconvenienced.

I kept things up pretty well through the run of Biloxi Blues last year, but after that I went downhill pretty quickly. I could, of course, pull out other excuses for that. Oh, I dunno…like “major life changing events” maybe? This last year has been a roller coaster of extreme highs and extreme lows in my personal life. Some of that is still going on now, and there are still nights when bad food and alcohol are the only things that seem to bring any comfort. I started smoking again around February of last year as well. Because, you know, if you’re eating like shit, not exercising, and drinking too much? Ya might as well throw cigarettes back on the table while you’re at it, right?

I’ve managed to put the cigarettes back down again by replacing them with an e-cigarette, but beyond that? I’m still pretty much looking at starting over from scratch as far as my diet and exercise are concerned. No, I still haven’t put back on ALL the weight I lost after my strokes back in 2000 (I’m still 109 pounds less than I was back then), but I’ve put enough weight back on that I’m noticing it. A lot. Physically and mentally. I’m not moving around as well, and I’ve got aches and pains I haven’t had in years. Most of my clothes fit poorly, and the ones that fit properly have sizes on the tags that make me cringe.

Oh, and I hate having my picture taken.

So I suppose this is yet another in a long line of “I’m really trying to do something about this” posts. I’ve re-upped my membership at LA Fitness and sometime within in the next few weeks I’d really like to start training to run again. I’m especially motivated to do so because there’s a show coming up next year that I’d really like a shot at being in, but it’s another military role. In my current shape? Not thinking it would be very likely I get cast.

I guess…I dunno? Wish me luck?

A less than stellar ending to this post, I admit.

The Rich Man Disease

Earlier this year I made the decision to get back into running. I had never officially gotten out of it, to be honest, but my routine had seriously fallen by the wayside. I made the commitment to re-start the Couch to 5k program from CoolRunning.com, and with the exception of one run managed to do so. While I never got really good at it as far as speed or distance were concerned, I love running and it made me very happy to think that I would be back to doing so again several times a week.

Right around the time I finished the program, though, I noticed that my left foot had some weird swelling issues going on. The longer I wore shoes the more swollen my foot got. It wasn’t ever horribly painful, but it was very annoying and uncomfortable. I backed off the running for a bit to see if that helped the situation, but there wasn’t any significant improvement. I went to an urgent care clinic to have it checked out and they gave me some anti-inflammatory pills but the situation did not improve. I eventually went to see a foot specialist who took an MRI of my left foot and pointed out that I had inflamed tendons. He made me wear a god-awful brace for two weeks and had me get some blood work drawn. When I went back a few weeks later the swelling was still there, although it had gone down a bit. The blood work was back, though, and the initial results seemed to indicate that I had gout.

I just had my follow up appointment. After a month of being on daily medication to treat gout and a week of giving up alcohol and animal proteins (I spent two weeks in NYC and Vegas right after my initial diagnosis…not the best way to start healthy living), my uric acid levels have barely moved. There is no question. I have gout. I am in the middle of a flare-up right now on my right foot. During my visit today the doctor says that the gout has resulted in a level of arthritis in both of my feet, and that it has also done permanent damage to the joints on both of my big toes (the right being the worst one…my range of motion is minimal on that toe). I have had my medication dosage doubled, and I’ve ordered a $300 orthotic shoe insert to help alleviate the pain and any future damage that this condition may do to my joints.

To say that I am feeling frustrated, angry, and depressed over this situation would be a huge understatement. I have done my best to lead a healthy life for over 10 years now. I exercise on a regular basis, I don’t drink often, I eat my fruits and vegetables…hell, I even quit smoking back in November. Still, my body continues to betray me with conditions that are incurable. First Roseacea, now Gout. Not fatal conditions, but not shit I can fix either. Both of them conditions commonly associated with alcoholics as well, and while I enjoy a good drink as much as the next person my family will attest that I am FAR from an alcoholic.

I’m not gonna lie…There’ sa part of me that just wants to say “fuck it” and give up this whole healthy living thing. If I’m going to be in pain and miserable I may as well be enjoying myself, right?

I don’t mean that…but it’s how I feel. I’ll get over it soon enough, but right now I’m kinda having a first world pity party.

Playing Dressup

It is October 31st, 2010.

Halloween.

In the grand scheme of things, Halloween is one of my favorite holidays. It is, however, also a holiday that often makes me feel very awkward when it comes to actually participating in the traditional method of celebrating it.

I have costume anxiety.

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Yet another Health Insurance Reform factoid

There are four of us on my insurance policy.  It’s a good insurance policy, by all accounts.  It’s certainly much better than not having insurance.  Most of the time, anyway.

This whole H1N1 scare, though?  If you’re following all of the CDC best practice guidelines if you think you’re exposed you should go immediately to a clinic and be tested and start on Tamiflu.

The Urgent Care clinic co-pay on our plan is $50.

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A few brief notes on health care

My son suffers from diabetes.  A little over a year ago he went into a state known as diabetic ketoacidosis.  He almost went into a coma and if we had not gotten him to a hospital there is a good chance he could have died.  When he got out of the hospital he was told to follow up with his specialist, so I called to make an appointment.  The earliest I could take my son in to see his specialist was four months later.

I have been using Prevacid for years to control my acid reflux.  A condition that, if let unchecked, can lead to Barret’s esophagus and, subsequently, cancer.  This is the condition that killed my Father.  When my insurance providers switched at the beginning of the year I was told that my medical provider would no longer cover Prevacid, the medication my doctor wanted me to be on, and that I had to switch to Aciphex.

I have also been using Metrogel for years to control my Rosacea.  Recently my insurance provider decided they would no longer pay for that medication either and I had to switch to another one.

There is no generic equivalent available for the type of insulin my son has to take for his diabetes and my insurance provider considers it non-formulary.  That ONE medication of his is $60 per month.  This does not include his other insulin, his needles, or his test strips.  There IS a generic equivalent of his second type of insulin, but it does not work as well and we will be switching back to the non-forumlary kind after his next appointment with his endocrinologist.

Alex had a problem throwing baseballs and was diagnosed with a condition called little league shoulder.  My insurance company would only pay for about half of the visits that his physical therapist suggested.  After we had run out of therapy his condition still persisted and he still cannot properly throw a baseball without causing himself some pain.   At this point we’re holding on to hope that he will grow out of it.

Should I go on?

All of you people who think this shit only happens in countries where they have “socialized medicine” are fooling yourselves.  Insurance companies get in the way of you and your doctor all the time. They deny treatments.  They deny medications.  They tell you what doctors you can and cannot see, even if said doctors have huge waiting lists.

Is socialized medicine better?  Damned if I know.  What I DO know is that all this bullshit being spouted about how there is nobody between you and your doctor right now is a bunch of lies.

Huff Huff Huff

Saturday, July 25th and Sunday, July 26th

I didn’t do any “official” exercise over the weekend.  Instead I counted the 8-10 hours of physical labor I put in on the new room as my workouts.  Pretty sure it’s a fair trade.

Monday, July 27th

5×5 Assisted Pull-Up – 160 pounds

5×5 Pull Down – 100 pounds *

5×5 Dumbbell Row – 50 pounds

5×5 Bicep Curls – 25 pounds

20 Minutes Elliptical

50 Minutes Treadmill

Tuesday, July 28th

5×5 Vertical Chest Press – 160 pounds

5×5 Pectoral Fly – 180 pounds (up 20 pounds)

5×5 Rear Deltoid Fly – 110 pounds (up 10 pounds)

5×5 Shoulder Press – 120 pounds

5×5 Complex Dumbbell Routine – 10 pounds (Upright row, Bicep Curl, Lateral Raise, Shoulder Press, Bent Over row)

20 Minutes Elliptical

Wednesday, July 29th

1×5 Assisted Pull Up – 150 pounds (down 10 pounds)

4×5 Assisted Pull Up – 160 pounds

5×5 Pull Down – 100 pounds

5×5 Dumbbell Row – 50 pounds

1×5 Bicep Curl – 30 pounds

4×5 Bicep Curl – 25 pounds

20 Minutes Elliptical

50 Minutes Treadmill

* Yet again, I have finally found the proper form on this exercise and needed to modify my weight down as I was cheating.

Daddy gonna work it out

Thursday, July 23rd

5×5 Vertical Chest Press – 160 pounds

5×5 Pectoral Fly – 160 pounds

5×5 Rear Deltoid Fly – 100 pounds

5×5 Shoulder Press – 120 pounds

40 Ab Crunches

5×5 Complex Dumbbell Routine (Upright Row, Bicep Curl, Lateral Raise, Overhead Press, Bent-Over Row) – 10 pounds

20 Minutes Elliptical

Friday, July 24th

5×5 Assisted Pull-Up 160 pounds

5×5 Pull Down – 110 pounds

5×5 Dumbbell Row – 50 pounds

5×5 Bicep Curls

20 Minutes Elliptical