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Time for a post-autumn, pre-holiday, pre-MRI status update here at the KEE Productions blog. I’m sitting at home listening to Miles Davis and contemplating sleep. It will have to wait at least until this is posted.

As I spoke of earlier this fall, my doctor has been helping me to find the right combination of drugs to help me get through each long, long day. Due to those experiments and the largess of my insurance company I seem to have now found a regimen of pills that allow me to enjoy the better part of each day. Nothing is complete panacea but I am pretty happy with where I’ve gotten to in this regard. I’m able to stay awake and mostly vertical for 12 hours a day and I’ve been able to enjoy more time out and about (within reason). I still get very tired, very crabby, and very frustrated at least once a day. The obvious problem with medications is the side effects that can rule your life as well.

I’ve been trying to take good care of my head as well. As will be a surprise to no one, this type of illness also takes a great toll on a person’s mental state. I fill my days with healthy doses of humor and pragmatism, but that is not always enough. I’ve rejoined a men’s group that I’ve been away from for a few years, and that is certainly a welcome weekly oasis for talking about all of this crap. I also looked into the possibility of anti-depressants as the situation certainly warrants them. I was chagrined to find out that I am not a candidate for them as the drugs work directly on the hormones that my cancer has thrown so far out of whack. In effect, the treatment could make my catecholamine situation worse. How nice for me! Luckily my mood changes very directly with how I feel medically so the new adrenal medication has me in very good spirits anyway.

I’ve been staying reasonably busy now that my body is agreeing with me more and more. Family and friends are the best medicine available by far. I’ve been to a few concerts lately and will join my cousin Jeff for one this Friday night. I can finally concentrate on movies again and have started to devour them again as my Facebook posts will attest. I’ve accompanied Maggie on some of her work trips to Chicago, Las Vegas, and St. Louis. Band concerts and high school plays to see my son Gage in action. Trying to follow my son Drew’s progress at Signal Corps boot camp and picking him out of group pictures has consumed a few days! All of these activities exhaust me to distraction, but I wouldn’t have it any other way.

My next tests at Mayo are only a few weeks away. Time to study up for urine and blood tests so I can get an ‘A.’ Abdominal MRI as well to check on the status of my stupid fucking tumors. Time to find out if all those phantom aches and pains are real or just internal bed sores!

I hope this isn’t tackily late, but I wanted to thank everyone that contributed monetarily to my sister Steph’s marathon run almost two weeks ago. Thanks to you she was able to meet her goal for the American Cancer Society and she had a hell of a run. I was there with other family members for the entire thing and it was exhausting just keeping up by car. I am truly touched by your generosity of the money that was pledged in my name.

I am well aware that my sister is one of those goofy running people that get enjoyment out of pounded pavement and stressed knees, but I am still honored that I was the impetus for her marathon run. It was awe-inspiring to see her float by every 4 miles or so. I am also so thankful to her for the noise she made to the ACS about getting pheochromocytoma information in front of them. I’ve said it before, but you really realize how rare your cancer is when you can’t find it on the Amercian Cancer Society site.

Thank you Sister Steph. I love you.



Relatively Up-to-speed

As is obvious to anyone that still even checks this blog, I’ve gotten pretty lax on keeping it up to speed. More than anything that is just a reflection of my mindset these days. Every day I am reminded in many ways to the fact that I have this weird cancer, but at the same time it seems to be losing it’s mental grip on me in small degrees. I am still very realistic about the disease and my ultimate chances, I just don’t feel like its going to happen a week from Thursday anymore. As I’ve said many times: I’m all for positive thinking just as long as that isn’t really a buzzword for denial.

In August, I took a couple of trips down to Mayo to see if they could get at the cause of the head issues that have been my enemy all these months. I went to see a neurologist and also have an MRI of my cranium. Both of these turned up nothing out of the ordinary. I was not surprised at this outcome at all as I have been convinced all along that these symptoms were tumor/adrenaline related and not something else.

So now I have the situation where my super rare disease has even super rarererer symptoms that haven’t presented themselves in Mayo patients before. Different medications are being tried, doses are being tweaked, and patience is being tried daily. Those of you that follow me on Facebook have probably noticed that I’ve been up and around some. The meds have definitely allowed me to be vertical more than in the past, but the fatigue is really tiring me out, so to speak. I can and will go to functions quite happily, but my energy is expended getting to and fro with a lot of sitting around once I get there. For every day such as my State Fair outing, there are 3 more days of laying about waiting for the new med regime to kick in.

So that’s where I’m at: Static tumors, weird symptoms, and heavily medicated.

All further treatment such as surgery, chemo or radiation is on hold until the tumors start growing again. That could be sooner, it could be later. I’ll be checked again in January. I continue to keep a close watch on my adrenaline production, heart rate, and blood pressure.

I know this post is a bit dry, but I gotta say: I’m tired of this shit. All signs point to this getting a lot worse in the future, but even at this point, this is all just a daily drag. Everyone that sees me on a regular basis will say that my mood is good – and it is – but some days I just want to take a brisk walk, go to a job, have a clear head, not think about pheos.

Driving toward Rochester earlier this week, I found myself feeling oddly calm and ready to get on with my tests and talk to the doctor. It had been a fairly quiet, good summer prior to this, and if things were going to change, I was ready to hit them head on.

In the past three months I had gotten my blood pressure and heart rate under very good control, albeit with a lot of daily meds. I had been spending a lot of time with family, both mine and Maggie’s. All-in-all not a bad summer. But I was still exhausted. I still suffered from 3-5 “episodes” a day that kept me in bed until late morning and then back on the sofa for the afternoon. I was still tied to a regimen of pills, naps, internet, and greatly reduced expectations. I had finally figured out how to function fairly normally within these confines, but any trip to the store or extended vertical activity meant an equal amount of time spent horizontal the next day. I also made the conscious decision to not really blog during this period as I was just trying to be as normal as possible and do life the best I could.

So I went through my battery of tests on Tuesday morning, had a great lunch with family at Lord Essex downtown, and then we headed over to get the results.

And good results they were!

No measurable tumor growth or multiplication. None. We’ll check again in 6 months. This is the best possible scenario for me. Time is now my enemy, so each 6 month period is a gift. I will take it (with a side of fries).

However…

(there’s not ALWAYS a ‘but’ , sometimes it’s a ‘however’)

…the episodes with my head, heart, and vision do not fit the pheo profile. They are troublesome, and the reason I went to the doctor in the first place last January. So it’s time to move on to neurology and try to narrow this down to something fixable. August 10th will find me back in the tube getting an MRI of my head. Not fun. One of these days I must blog about all of the different times I’ve been in the various tubes (it seems to me I should be radioactive, or at the very least magnetized).

It has been a good week. I’m very happy with the tumor results. I’m hopeful that the Mayo Neurology Dept will be able to help me, and the rest of the summer is laid out, to be taken advantage of as much as I can while doing my damndest to stay vertical during the day:

Enright family vacation on Cross Lake, Gage’s upcoming Marching Band season, attending Drew’s Signal Corp graduation in the spring, trips to London and Vegas with Maggie, the real possibility of a EuroPass vacation. Hell, even a job if I get really crazy. All things and more that I am once again looking forward to.

Remember, we’re all terminal. Some of us are just “lucky” enough to get official walking papers.

Oh, got to see, got to know right now
What’s that riding on your everything?
It isn’t anything at all

Oh, got to see, got to know right now
What’s that writing on your shelf
In the bathrooms and the bad motels
No one really cared for it at all
Not the gravity plan

Early, early in the morning
It pulls all on down my sore feet
I want to go back to sleep

In the motions and the things that you say
It all will fall, fall right into place
As fruit drops, flesh it sags
Everything will fall right into place
When we die, some sink and some lay
But at least I don’t see you float away
And all the spilt milk, sex and weight
It all will fall, fall right into place

Oh, got to see, got to know right now
What’s that riding on your everything?
It isn’t anything at all

Early, early in the morning
It pulls all on down my sore feet
I want to go back to sleep

In the motions and the things that you say
It all will fall, fall right into place
As fruit drops, flesh it sags
Everything will fall right into place
When we die, some sink and some lay
But I won’t stop until you float away

When I started this blog, I told myself that I would not censor myself or put on a happy face as my public persona. Up until now, however, I haven’t felt like writing a blog post unless I was already in a pretty good frame of mind to begin with. I’ve imparted quite a bit of bad news over the last couple of months, but I’ve only ever written about it when I was prepared to speak of it pragmatically and mostly positively. Perhaps it’s because I’m in a 10-week window of no new information until my next appointment, but I’m starting to get fairly frustrated.

I’m frustrated because my meds are not working like they should. I’m frustrated because the meds cause other symptoms that aren’t great to deal with. I’m frustrated because I haven’t worked in almost 18 months and I’m just plain bored. I’m frustrated because I have an incurable, fatal disease. I’m frustrated that the doctors can’t do more or say more for me. I’m frustrated that I stumble around medicated and logy all day long. I’m frustrated that I can’t get more exercise and actually spend most of the day on my ass. I’m frustrated that the meds and ass-sitting are causing me to gain weight. I’m extremely frustrated that a 45-minute walk puts me flat on my back for a day and a half. Crap, I’m just frustrated.

I’m on three medications that are supposed to lower my tumor-caused high blood pressure and relieve the rest of my symptoms. We still don’t have it right. They lower my blood pressure for sure, but my pulse is still way too high (there is nothing more unnerving that constantly being aware of your heart, and how hard it works), my equilibrium is iffy at best, the headaches come and go at will, my heart and back just plain hurt at times, the tingling around my eyes sockets is just plain odd, and the twitching of my arms and legs in bed is enough to want to be swaddled. All in all there is just too much adrenal hormone and drastic medications coursing through my body. I miss feeling good and right.

Today I came home from Maggie’s mid-morning and arranged for my clothes washer to get fixed. And then I took a nap. Then I made some lunch, and took a nap. After the repair guy left I threw in some laundry and took a short nap. Eight hours later I’ve managed to wash, dry, and fold three small loads of laundry and I am completely wiped out. I’ll be fast asleep as soon as I post this diatribe.

I’ve recently come to a realization that I don’t like. As much as I complain about the meds, they are certainly helping a lot more than when I was on nothing and even more miserable. But even the level they are working at is contingent on one major thing: I DON’T DO ANYTHING ALL DAY! I can handle about 90 minutes of the most basic activity and then I am down for the count. Of course this is better than before when I was always down for the count, but not much. So inasmuch as the meds work, they only work for me who doesn’t have to do anything all day. If I had a job, if I had to be on my feet all day, these meds would be a colossal failure. That stinks.

I’ve got tumors around my spleen, liver, kidney, pancreas, and diaphragm. Even if they don’t grow in size by July, I still have these side effects of them being there in the first place. I still think that I am doing pretty well overall mentally, but this is not fun. Not fun at all.

It’s been exactly one month since I started this Pheo Blog and a good couple of weeks since I posted anything of substance here. A good part of the reason for that is that things have been fairly quiet on the health front. My Mayo doc has been working with me on my meds so that I now take three different medications to decrease my blood pressure as well as mask the symptoms of the hormones so that I can function relatively well. The side effects of the pills are a bit annoying, but overall it is great to be vertical and relatively pain-free for hours at a time. I still take 2-3 heavy naps per day, but all in all I am doing OK.

Although the health front has been pretty quiet, everyday life has been filling in with its own distractions and annoyances. Within a 10-day period I had to turn down a potential job interview, the battery died in my car, the entire car stereo died, my iPhone went dead, my washing machine broke and decided to spill water all over the laundry room floor, my cable modem completely died, my backyard canopy disintegrated, and my insurance company denied a 5,000 dollar PET Scan as “medically unnecessary.” Normally, all of that would have sent me right over the edge, but for some reason, it was kind of nice to worry about normal problems for a while. It gave me something else to focus on other than my stupid tumors and medications. Of course it certainly helped that my sister Tammy and her husband Don came up to visit me from Myrtle Beach for a long weekend. Apple gave me a brand new iPhone for my troubles (fun!) and I also spent close to a week in the Tampa Bay area soaking up some much-needed vitamin D. Plus Maggie and I leave for Scottsdale shortly for a week of R&R for me, and work for her.

Getting myself set up in the state’s high-risk insurance pool is my latest project. As I’ve mentioned before, my COBRA benefits expire on June 30th and I am somewhat busy tracking down all of the required HIPAA certificates and filling out applications in preparation of my July 1st transfer to this program. It turns out that I am not able to go on the new national ’pre-existing condition’ program just signed into law as Minnesota already has their own program. Judging from the bills I’ve already seen this year, this will be a real financial lifesaver for me moving forward.

My next appointment at Mayo has been set for Tuesday July 27th. I have three appointments that day. A blood draw to test my plasma metanephrines, an abdominal MRI to assess the status of my tumors, and a follow up late in the day with my doctor to discuss the results and decide what the next steps are. If they’ve grown in size or even multiplied then I’ve got new troubles and decisions to make. If they are relatively static then I hope to hear that I’ve got some real time to breathe and maybe even look for a new job.

Now wouldn’t that be nice? Float On