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Archive for April, 2010

Yesterday, I “Twitter-teased” (Tweasered?) that my appointment at Mayo on Tuesday resulted in some relative positivity. That is certainly true, and therein lies the extreme roller coaster nature of this entire situation. Some days have great news, some days have bad news, and in some ways the most frustrating of all, many days have no news.

Tuesday was a mixture of bad and good that weighed in just a bit more on the good side.

The first appointment was with the surgeon that I have already spoken with twice. He is very good, very clear, and very blunt. Exactly what I am looking for. We went over my latest MRI to see where the pheos are choosing to hang out these days. As he has stated before, and that I am well aware of, the situation ain’t pretty. Not pretty at all. We went over the location of the half dozen culprits and discussed the inevitability of there being more that are just not seen at this point. The doctor reiterated that surgery is not amenable at this time due to my previous surgery being only in late February as well as the murky efficacy of going in there in the first place. I’ll let the official report from the surgeon speak most clearly for the situation at hand:

In an ideal world surgical resection would remove all tumor. I think this is virtually impossible given all that Mr. Enright has gone through. Nonetheless, if a narrow focus of tumor is identified, then surgery may be of benefit. This would be an open laparotomy with potential aggressive surgical intervention potentially involving hepatectomy, partial gastrectomy, pancreatectomy, splenectomy, left adrenal bed resection, and portion of the diaphragm.

Well, what can a person say when they read that about themselves? Three options:

1. Gulp
2. Shit. Fuck. Son of a Shitfuck.
3. What are my other options?

So, figuring the third option was the most productive, we headed upstairs to speak with the head of the Endocrinology Department and a world recognized expert on pheochromocytoma. Following is his highly condensed and paraphrased talk with me:

Keith, what you have is incurable. There is nothing at our disposal to get rid of this disease. You are young and otherwise healthy. Right now the most important things we can do for you are symptom control and quality of life. Your tumors appear to be slow growing. It took almost 10 years for you to get to this point after your original 2-inch tumor was removed. Yes, there are a lot of them, but most of them are quite small. We’d never be able to find them all, and we’d never be able to remove them all. Anything we do to you will poison you. Surgery is poison. Chemo and radiation are poison. Poison is just too drastic for you in the short term. It doesn’t mean we won’t have to resort to it in the future. We can control your symptoms with medication. We’ll scan you again in July and see how the tumors are doing. We will constantly revisit this and adjust our plan as needed. Enjoy yourself for a while.

Some of you might be wondering where the good news is? Well remember, I called it relative positiveness. I walked out of there feeling pretty good for a few reasons:

1. I had just become the patient of one of the top pheo doctors in the world.
2. He was straight with me and laid things out clearly
3. My new medications were slowly helping my debilitating symptoms
4. Surgery was not imminent.
5. Chemo or radiation were not imminent.

Nothing has changed for me of course. It just feels great to call the hounds off a little and get a chance to breathe. My next tests and scans are in July and everything could change at that point. Until then, I’m going with the program.

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Thanks for reading, everyone

As of … right now, I am at exactly 1000 views of this blog in a little under two weeks.

pudding

That is pretty gratifying and it makes me happy that people are coming here to read about my situation. I’m sure it’s plenty more views than if I had just started a blog with my second choices: bitching about the catholic church, or how much I despised “Avatar.”

Anyway, thank you for reading. Please keep it up. Please comment. And please stay tuned for more after my two Mayo appointments this week.

Until then, 3 minutes and 52 seconds of pure cinematic bliss that can get me through any day…

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After getting the “all clear” from my doctor in 2006, my life went off in all sorts of non-pheo directions. Work became very busy as we integrated three companies on the east coast. Many trips to Boston and Baltimore kept life busy and exciting on the work front. My two boys and I took a 10-day trip up the PCH from San Diego to the Redwood Forest. I tried divorce again (success!), and I continued to work on my MIS BS degree. In 2008, a large Japanese firm bought out my company and I lost my position that I had for 12 years with a firm that I loved. As 2009 started, life was stretched out before me with more freedom and plans than I had ever experienced before.

I had no intention of getting a job for at least ¾ of the year. I started out the year with a trip to New Orleans with friends. From there I spent the next six months finally finishing my BS degree 25 years after starting. August brought a celebratory solo-driving trip of the South and East that took the better part of three weeks (and 12 days in Myrtle Beach with the 6 SC Super Schunks). After reluctantly returning home, I spent September stripping and painting all of the walls and woodwork in my bedroom, office and connecting hallway. October brought the first dates with the wondrous Maggie H. and the first stirrings of finally facing up to getting a new job.

I started out slowly at first. No use rushing a good thing. A few connections were made. Resumes went out. Long lunches with old friends and colleagues were generously referred to as “networking.” Trips with Maggie to Scottsdale and NYC helped break up the monotony of job search avoidance. January brought it’s typical personal reform attempts and the job search started officially and earnestly. Things were starting to fall in place: I took a couple of job search classes with the State, more resumes went out, and two strong potential positions fell in my lap. Each required a 10 essay question report prior to the interview that I worked on diligently for the better part of a week. As the interview dates for both loomed, I became aware that I was getting sick for the first time all winter. I was exhausted. The excitement and anxiousness of the upcoming interviews masked it somewhat, but I was definitely not feeling right. Before each interview I spent the better part of 24 hours lying in bed, resting up for the inevitability of putting on a suit and going out into the cold to sell my wares.

And then a blood pressure spike. The biggest one I could ever remember having in almost the entire decade of dealing with this. A blood pressure spike that left me confused, anxious, and unsure of what to do next. Oh, and did I mention it happened in the middle of a job interview? I was asked a question that I couldn’t immediately answer. Instead of taking a deep breath and thinking for a minute, I soldiered on with no idea of what I was talking about. The words spilled and the blood pressure soared. I managed to finish the interview and walk somewhat soberly through the lobby and to my car. I called Maggie on the way home: “I’m sick.”

I spent the entire weekend on the sofa and went to the doctor on Monday. He turned around and sent me back to my specialist who hadn’t seen me since 2006. Our homecoming was punctuated with concern, confusion, and the ordering of hormone tests. I gave up blood and other fluids, went home and started to feel somewhat better. A few days later the phone rang with my doctor on the other end of the line:

“Keith, your blood and urine tests show hormone levels 9 times higher than they should be. Obviously this is highly suggestive of recurrent pheochromocytoma.”

Shit.

“I’m going to have you come in for some scans. I’m sure you remember the drill.”

Of course. Shit.

CT Scan: Two spots that seem quite suspicious. More tests.

MIBG Scan: Two more spots in addition to the first two. Time for surgery.

So the same surgeon that I had for the 2001 surgery went in looking for 4 problem spots. He found them with no problem. He also found 29 other tumors for his troubles. 33 pheo tumors of various size and location. I would definitely call that the mother lode. 33 pheochromocytomas from around my left adrenal bed, my spleen, behind my left kidney, and from my stomach lining (the omentum).

And then:

“Keith, your condition is just too rare for us to continue treating here. No one here has ever dealt with a recurrent pheo event of this magnitude. You are the first. It is time we sent you to the Mayo Clinic.”

And in late March, off to Rochester I went.

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There is plenty of great written information on the Intertubes regarding pheochromocytoma. Not so much when it comes to video.

Although the following piece of grand cinema is quite informative, I cackle like a hyena every time I watch it.

For the record, I always make sure to wear underwear before collapsing into any pleather furniture. It is just the right thing to do.

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I hope everyone is enjoying their Thursday afternoon. I certainly am as I’m in between headaches. I’m sitting on the patio at Maggie’s place AKA The Condo AKA The Mpls Digs. It is certainly a lovely day as I look out over Loring Park. However, the Earth Day Tornado Drill certainly threw me for a loop sitting here on the 11th floor.

As you all should know by now, this latest Pheo Party is not my first rodeo.

In early 2001, I found myself suffering from some fairly debilitating headaches. As I was an otherwise healthy 35 year old, I did what many guys seem to do in times of bodily stress; I ignored it. Eventually it got too bad and I made an appointment with my doctor. I went in complaining of said headaches. The nurse took my blood pressure. She puzzlingly looked at the results. She took it again, again with the same puzzlement. After the third time with the same results and without relaying them to me she left the room. The doctor came in and mumbled something about stupid nurses not being able to run simple equipment. He took my blood pressure himself and suffered the same reaction. I was sent home with strict instructions to see a specialist and to go to the ER if my headaches got any worse.

Well, by that afternoon, my headaches were worse so my sister Stephanie drove me to the ER wherein the smarmy attendant couldn’t believe I was at the ER for high blood pressure. He stated, “Well, sit down here and let’s see if you can break the equipment.” He took one look at my reading and with a gaunt look said: “You broke it.” I was immediately instructed to lie down on a gurney and I was rushed into a private room. I was started on a morphine drip among other things and told to keep completely still. All of this as they tried to figure out a way to get my blood pressure under some semblance of control.

Normal blood pressure is around 120/80.
High blood pressure starts at 140/90
Extreme Stage 4 High blood pressure starts at 210/120.

My blood pressure that day? 240/144.

One foot in the grave and the other on a banana peel.

I ended up spending the week in the hospital as they got the blood pressure down and tried to figure out why a healthy 35-year-old male would have such a drastically elevated reading. Around day three a team of doctors came into my room very excited:

“You have what’s called pheochromocytoma. We are all very excited because none of us has ever come across a real case of this.”

In other words I was a textbook case of a textbook disease. Great…

After a couple of scans, they were able to pinpoint the tumor on my left adrenal gland above the kidney. And then they sent me home. I was on strict bed rest for 30 days as the medications they gave me continued to work on getting my blood pressure under control prior to surgery. I was not allowed to get up for more than 5 minutes at a time 5 times a day. That was it. Boring you say? Fucking interminable I say. All I could do was sleep, watch TV or read. My body clock shifted after 1 week and my sleeping time was 4am to noon. With plenty of naps throughout the day.

And then I finally went back to the hospital to get it removed. I was told of the risks and the reason for the 30 days of bed rest. When they removed the tumor, there was great risk that my blood pressure would slam down so hard that my body would not react well at all. The surgery went well. They took the tumor and my entire left adrenal gland in the procedure. I woke up in Intensive Care and was told that everything went well with no blood pressure events.

On day three after surgery they were contemplating sending me home when my blood pressure spiked again. Everyone was gob smacked. How could this be? In for more scans I went. Nothing else was found and my blood pressure returned to “normal.”

Although my tumor was classified as benign, I was nonetheless put in the oncology ward of the hospital. This did nothing to help my attitude and after three more days of lying next to the 18-year-old kid dying of brain cancer I insisted that I be released to recuperate at home, which they finally did.

I spent another 30 days at home and finally went back to work 10 weeks after the ordeal had started. Of course there were plenty of follow-up appointments and all of us were disappointed that the surgery had not completely cured my high blood pressure, although it has been reasonably been maintained by medication up until this year.

And then the blood pressure spikes began. And in for more scans I went. From 2001 to 2006 I had about 6 different scans to try and find the cause of these spikes. Nothing was ever found. My blood and urine tests always came back normal. I would spike and then by the time I got in front of the doctor everything was fine.

After 18 months of no spikes we all seemed to breath a sigh of relief and the doctors and I felt I was finally passed it all. After all, this is such a rare tumor in the first place; the odds of it coming back are practically infinitesimal.

In 2010 I was to find that “practically infinitesimal” actually equals astronomical.

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Not a whole lot going on this week as far as new information. I got my insurance paperwork into the mail yesterday, so now I wait to see how well I will be covered for all of this post-COBRA. I got my appointments for next week at Mayo. I’ll be speaking with the surgeon again, as well as the head of the Endocrinology Department, and a Medical Oncologist. I requested these appointments so that I could have a blunt talk with everyone as to my options and expectations. Nobody seems to want to talk about chemotherapy or radiation yet and I want to know what’s up. I’ve been reading other blogs out there from people suffering through malignant pheo and the chemo process. It surely isn’t pretty, but I crave the information, anecdotal as it is.

I’ve been hanging out a lot with old friends and family. That has been wonderful. Lots of lunches, and a few dinners as well. Whenever people come my way, I’ve been exposing them to the wonders of Lebanese food at Beruit in West St. Paul. Yummm…

If you haven’t already, please check out the DetermiNation link to the right. My sister Stephanie is an avid runner and is running the Twin Cities Marathon this year to help raise awareness of Malignant Pheochromocytoma for the American Cancer Society. I know that I have mentioned how rare this is, but it really hit home when I did a search on the ACS website for it and NOTHING came up. Geez.

That’s it for today. Tomorrow I plan to post a rather lengthy missive on my original 2001 odyssey that started it all.

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If these blog posts start to feel a bit like a roller coaster, that is only because it is completely indicative of how I am trying to process all of the information that comes my way regarding what is going on with me.

I posted the previous information a few hours after hearing from my endocrinologist and the general air of uncertainty that that conversation bred. Friday morning I had a long conversation with my Mayo surgeon, and while the news was certainly no better, at least I felt like I had more of a leg to stand on and something I could grasp onto better.

As I stated previously, the latest tests have found 6-8 more tumors scattered around my abdomen. As I just had surgery 6 weeks ago, this is certainly news for concern. There really only seems to be two options here:

1. My previous surgeon missed these while he was removing the 33 tumors that he did manage to get.
2. They were so small 6 weeks ago that he couldn’t see them, and they have grown to this size in that short amount of time.

Of course my only real reaction to option 2 is … gulp.

So now that we have this base line, we are going to check them again in early June. If they haven’t grown or multiplied in that time, then great, we’ll go in and remove them as best we can. Of course, if they are actually attached to my kidney, pancreas, or liver, then that is not as simple as it may sound. But if they are indeed static, then we have a better handle on what we are dealing with and we can try to debulk the tumors as much as possible. Of course, if they have grown or multiplied, then the situation gets murky again.

Other than all of that it has been a pretty good few days. My boys are here and they have done a great job of whipping my small little yard into shape for spring. We did some grilling last night with family, and tonight I’m having dinner with an old friend. I still can’t go more than 3 or 4 hours without dropping to the sofa in utter exhaustion, but my “up” time has been more enjoyable as long as I take it very easy.

This week I’ll be tackling some insurance issues and hopefully providing more background here on how I got to this point. Thanks to all of you for the feedback so far, and keep it up! Nothing helps me more than actually getting to talk about this.

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