RIP Teddy

Well I don’t think anyone is unaware that Edward M. Kennedy passed away last night. It’s all over the media – almost too much on NPR. Now I’m a long time supporter of NPR but they were getting a bit bogged down in sentiment during All Things Considered this afternoon. Heck, I think I even heard Robert Siegel’s voice crack a bit.

Now, I am a staunch Democrat and a Kennedy supporter but I wasn’t that big a fan of Ted as a person (I’ll get to that in a minute.) Even so, it’s kind of hard to believe that he’s is gone. Mel and I were talking about it and I think spending a large part of our lives on Cape Cod meant that Ted and the Kennedy family were just part of our lives. Ever since Mel and I became politically aware, Ted Kennedy has been part of our lives. Heck, he’s been in office longer than I’ve been alive. And living on Cape Cod meant that you might run into Ted at the airport or at the Melody Tent or, dare I say, a social gathering (though that only happened once.) He was a charismatic, influential person – even been called the most influential man in American politics who was never President. It was touching to here tributes from some of his closest friends and staunches opponents – men like Orrin Hatch who said, “Today America lost a great elder statesman, a committed public servant, and leader of the Senate. And today I lost a treasured friend.” This is perhaps his greatest legacy – his ability to find allies in the most unlikely places.

But most of this is rehashed drivel that you’ve heard (or are going to hear,) again and again.

But what about Ted Kennedy as a person – as a man? I’ve met Mr. Kennedy on several occasions and have even had the pleasure of shaking his hand and bending his ear for a minute or two. And I find that he shares a trait with several of his Democratic colleagues. In my past job I had the honor of also meeting and chatting with John Kerry (back before the run for President.) I also met and had an extended conversation with then Speaker of the House Tip O’Neill. All of them Massachusetts Democrats. All of them men I supported (or would have supported in the case of Mr. O’Neill who died just as I was beginning to exercise my right to vote.) And all of them men whom I didn’t care for as people. All of them arrogant and condescending and self-centered. All of them men who would look down their noses at you and make you feel like you were intruding on their time. And all of them men I would vote for again in a heartbeat.

Now, I’ve also had the opportunity to meet and chat (albeit very briefly,) with then Massachusetts Governor, Mitt Romney. A man who stands for everything I’m against (at least politically speaking,) and for whom I would never vote. I found him warm and genuine. A man who took time to thank me for the extra effort that went into setting up a meeting he chaired; something Ted never did – oh he thanked the influential important people (like the college president,) but he didn’t have time for the little people. So this is my dilemma – I like the Republicans but can’t abide their politics and I dislike the Democrats but whole heartedly embrace their policies. I’m at odds with myself.

And why is it that as Democrats we have the high ideals to fight for the little guy – to make the world even for all – and yet, all of our representatives seem to enjoy the privileges of membership so much? Why does a man like Ted Kennedy, who spent so much of his public career fighting for equal rights, and good jobs, and health care for all feel such a need to “act” his station? Why are these guys such SOBs?

I don’t have answers – just questions. And Ted will have to take these issues up with his maker. History or time or lore may brand Ted Kennedy as one of this countries greatest statesmen – and for the most part I agree – but I know Ted as a man who had more than his share of vices and faults. I wish him and his family peace at this difficult time and I may even shed a tear for him. But I hope upon hope that the next generation of great Democratic statesmen are more down to earth; more common – OK BO, time to pony up!

Some thoughts on Sanford

Now that the media frenzy has quieted down somewhat, I figured I’d weigh in on the Sanford issue.


First, let me state unequivocally that I’m a strong believer in a person’s right to do whatever they want in their bedroom without interference from state or local government – provided, of course, that their actions don’t amount to rape or child molestation. Beyond that, a person should have the right to privacy with regard to with whom and in what manner they choose to pleasure themselves. If, in doing so, a person is unfaithful to their spouse (or their God,) well then, that’s and issue they’ll have to resolve for themselves.


As for our illustrious Governor, there is more than a small group of citizens down this way who feel he’s being unjustly crucified for his actions and that he should be left to deal with the consequences of his actions in private and not have them played out in the farcical arena that is our so-called “news media.” And, I have to admit, I agree with them to the extent that he and his family ought to be afforded some measure of privacy in working out the ramifications to their personal lives.


But here is where I draw the line – Mark Sanford is not a private citizen anymore. He is the duly elected Governor of the State of South Carolina. And as such, has sworn to lead this state in a very public manner. But his actions last week were more akin to a wanted criminal on the run rather than those of a public official. Is a Governor to be afforded the opportunity to take a few days off once in a while? To even shirk his security detail and “disappear?” Of course, why not? We all need to do that once in a while. And while I whole heartedly disagree with almost all of his political positions, I can understand and appreciate that the past couple of months have been very difficult ones for the Governor – what with all the budget cuts that had to be made the fight over federal stimulus money. I can imagine that his job has had a tremendous amount of added stress of late. All of which might make someone want to take a few days off. But to do so unexpectedly and without explanation is inexcusable for someone in his position. There is no reason why he could not have passed the reins over to our Lieutenant Governor and made arrangements for business as usual to continue in his absence. Instead, he chose to ditch his security, leave his office staff without a plausible explanation for his absence, and hop a plane to Argentina to….well….you know.


The fact that he chose to be unfaithful to his wife is unfortunate and undoubtedly very painful and difficult for his family – but it doesn’t make him a bad Governor. Skipping town without explanation and leaving the entire South Carolina state house in a tizzy does. Oh, that, and the fact that he drinks the GOP Kool-Aid.


Oh, and for those who keep touting Sanford as a righteous man because he “came clean” about the whole story – I don’t believe for a minute that he would have been quite so forthcoming had he not been cornered in the airport coming off the flight from Argentina by a local reporter with a fist full of love notes (emails) sent between the two lovers. This was a forced confession if there ever was one.


As for Ms. Maria Belen, she’s come out recently and asked for privacy of her own – sorry, but you don’t get to sleep with a high profile American politician (especially one who is married,) and not expect to have every detail of your life examined with a microscope. That’s just the way it goes.

Summer Camp

Here are a couple of pictures from Noah’s finial day of Cub Scout day camp. He had a blast this year. They built a camp chair and bird feeder; planted a soda bottle terrarium; participated in a camp wide baseball tournament; and honed their archery and BB skills. Noah particularly liked the latter task as he was able this year to score high enough to earn his marksman badge.

Yesterday, prior to leaving work and heading out to witness Noah’s Woop Dee Doo Review (a collection of skits and songs performed by each den at camp,) I was chatting with my friend Tommy at work about his summer camp experience. Tommy is a long time councilor at a Christian summer camp. He and his wife Becky take a week off every summer and head into the upstate of South Carolina to help organize and run a residential camp for children nine to nineteen. As you might expect, they have daily religious services and activities based on biblical teachings. But they also have a lot of just plain fun. Kids come from all over the southeast – with many enjoying the experience so much, they’ve become “repeat offenders” (Tommy’s words, not mine); often recruiting friends for subsequent years.

At some point in our conversation, the discussion came around to cost. I had said how inexpensive I thought Noah’s camp was at $75 for the entire week – at eight hours a day that works out to less than $2.00 an hour. That seems more than reasonable for the vast variety of activates in which they get to participate. Heck, that doesn’t even come close to covering just the time alone. But I was floored when Tommy told me his camp only charges $150 for their entire week of residential camp. They have kids show up on Sunday and stay through the following Saturday for what amounts to little more than $1.00 an hour. I mulled this over a second and blurted out without thinking, “Wow, I should send my kids to your camp.” Oh hell, now I’ve done it. I couldn’t take the words back, but what was I going to do? I had opened my mouth and firmly stuck my foot in it. Tommy reacted exactly as I had hoped he wouldn’t. “Yeah, you should. If you’re interested, I can get you some information,” he said. OK…..OK……how to respond? “Um….,” I attentively said, “I don’t think my kids would fit in very well.” “Why not?” asked Tommy. Oh no, lets not go down this road. Tommy then started into a litany of reasons why my kids would fit right in and how they had a wide variety of kids from many different backgrounds attending the camp. He said something about “goth” kids and something about an orphanage but to be honest, I didn’t hear much of it. There was this loud screaming voice in my head – “No….no……NO! My kids would be eaten alive by those other children. You’re just not getting it!” But I just bit my lip and smiled and tried to look like I was listening intently. Finally the noise stopped. Tommy finished his dissertation and we both decided that it was time for us to find some work to be done. And as he headed away, I really just wanted to come clean and tell he why I thought my kids might not survive a week at bible camp – “Tommy,” I’d say, “my kids…well….they wouldn’t really fit in……because…..well……my kids…..they’re kind of…..sort of….well… Oh hell, Tommy. My kids are LIBERALS.”

Still Ticking

As of today, I’m am six weeks out form my triple coronary bypass surgery. I am almost back normal though still somewhat sore. I’ve been back to work part-time for the last three weeks and everything in our lives is slowly getting back to normal. I have some follow up appointments coming next week – but all seems to be going well.

I need to send a huge thank you to all our family, friends and co-workers who offered their prayers, their help, and financial gifts during this difficult time. The outpouring of support was overwhelming to both Mel and I and we are eternally grateful to have you all in our lives. We can’t thank you all enough.

God Bless and Be Well
Chris

And The Beat Goes On

Well the verdict is technically still out – but my prospects look good. Last Monday morning, I went in for my triple bypass surgery. I was taking into the operating room about 7:30 and came out around 1:00 or so. It all went fairly well though I did require three units of blood and two units of platelets. Afterwards, it took a while for them to get my ever dropping blood pressure to stabilize. But, in the end, everything came together and I was transferred out of ICU on Wednesday and sent home last Sunday.

I’m still quite sore and my energy level is very low, but I feel stronger with every day. My usual routine has me taking the first part of the day fairly slow – resting, reading, or watching a movie (or two.) Then, when Noah gets home from school around 2:00 or so, I get more active. This has me up and about when the family is here instead of being exhausted when they’re at home. At the doctor’s suggestion, I’ll start taking short walks every day and increasing my distance gradually.

I still have a small drainage tube in my lower left side that is still putting out a small amount of fluid. The doctor felt it was worth waiting on pulling it and will take it out Monday. Other than that he told me I was doing well. Still can’t drive yet and I won’t be able to lift anything bigger than 10lbs for six weeks (that’s when my breast bone should be fused back together.) The medication regime is slightly more complicated than before surgery, but I’m used to that by now and it’s really just a case of keeping yourself organized (and having a wife who’s real good at reminding you.)

Be Well.
Chris

The Verdict is In

Well the decision has been made. On Monday morning at 5:30am I will be reporting back to the hospital for surgery. At around 7:30 that same morning they'll crack my chest and perform a triple coronary bypass surgery. If all goes well, the surgery should take about 5 hours after which I'll spend a day or two in the ICU. Then a week or so in the hospital and at least a week of no activity at home.

I don't mind telling you that I am a little more than just apprehensive about this surgery. I'm not that old but I'm also not in the best of health. The thought of them opening up my chest bothers me more than the actual heart surgery. It will undoubtedly be a couple of very painful weeks and up to two months of limited activity. Of course the alternative isn't really an option - if we do nothing, I run the risk of a massive heart attack and putting in stints would very likely neither completely solve the blockages nor last for very long before closing up. So surgery it is.

I hope you'll understand, but I'll be out of touch for a while. I'll get an update here as soon as I'm able - hopefully by the end of next week or so.

Be well.
Chris

Good Morning

Yesterday was an interesting day to say the least. It started with a very long wait for my MRI. Mel left work early and came here to spend the day - we watched a lot of mundane television.

Before my MRI I got a visit from the Cardiac Surgeon - a man who is no doubt very good at what he does but has very poor bedside manner. He informed us that surgery was not an option because the condition of my liver was so bad. Up to now the story from both my liver doc and the cardiologists has been that the heart was causing the liver problems and that fixing it (heart) might very well solve a multitude of other symptoms. This was the first that we had heard someone say that the other symptoms would prevent fixing the heart. Now, to be fair, the surgeon (a man who's name escapes me early this morning) didn't say there was nothing to be done, just that he wouldn't preform any by-passes. The surgeons conversation with me lasted all of five minutes and left us both a bit stunned.

Later in the day, I gritted my teeth through a lengthy cardiac MRI without any sedation or anxiety medication - something that is not easy for me, being as clostrophobic as I am. Afterward, we received a visit from Dr. Ruben, my hepitologist (liver doctor.) He was in a bit of a tizzy over what the surgeon had said as he did not believe the surgeon had an accurate understanding of exactly what was going on in my liver and he (Dr. Ruben) felt that by-pass was not only a viable option, but might be the best course of action available. Dr. Ruben spoke with the surgeon (at some undisclosed location) and we were treated to a second, much less declarative visit from the surgeon. He said that in light of new information from Dr. Ruben, he was willing to consider the idea of bypass surgery once again. Just FYI - we're looking at triple bypass in my case - I've got three coronary arteries that are significantly blocked.

As of yesterday afternoon, the plan was for all the doctors to get together this morning and discuss the situation and then come to me with a united front of ideas. We'll see - I'm not holding my breath at this point.

As for today, I have yet to be told whether or not they'll let me eat today (after two days of one meal days, I'm still quite peckish.) The plan is to go in and place the stints today if that's what the we all agree is the best course of action. But of course that means I'll be NPO once again. If we opt for surgery or some other course of action, then it may be fine for me to eat - but that decision will likely not get made until well after breakfast time.

Well, that's about it for now. I hope everyone's day is better than mine.

Be well.
Chris

Greetings from Room 3035

So here I sit in a hospital bed once again. Yesterday's cardiac cath went well, but the docs found some major constrictions in my cardiac arteries (those supplying blood to the heart itself,) and they decided it would be prudent to admit me and run some further tests. I'm presently waiting on a Cardiac MRI to be do sometime this morning or early afternoon. The aim of this is to determine whether there is additional damage to the heart valves and to try and get a clearer idea of the extent to which my constrictive paricarditis has progressed. Then I'll be meeting with the surgeons to discuss options. Right now, there are two options on the table - another cath session to include the placement of stints or cardiac by-pass surgery.

Right now I'm just sitting here bored out of my mind and hungry as hell - I'm very much looking forward to a big slice of pepperoni pizza when this is all over. The cool thing is that hospitals now come equipped with wi-fi and computers built into patient TVs. At least I can keep my sanity by staying in touch.

I hope all are well - I'll keep this updated as best I can over the coming days.

Chris

You Gotta Have Heart

Here’s some more specifics about my heart condition and where I’m headed from here. My hospital file has the official diagnosis currently as Congestive Heart Failure. At 45, I’m a bit young for such a lofty diagnosis, but then this particular classification is really just a catch-all for a lot of different issues and doesn’t adequately explain my situation. Sufficed to say, my bid for the summit of Everest is on hold for a while (heck, my bid for the second floor of the house is in question at the moment.)

To really understand my predicament, you have to go back in my history a bit to the late seventies when I underwent ten weeks of mantel radiation for my Hodgkin’s disease. Although radiation therapy had been in use in one form or another for over eighty years at the time, many of the long term effects were still not fully understood – and, to be honest with you, when you’re fighting to rid yourself of cancer, the long term effects are not foremost in you mind. As it turns out, it is not uncommon for radiation patients to later develop a number of medical problems including a hardening of both the pericardium (the sac around the heart,) and the heart muscle itself. As of right now, we know that I have a fairly significant hardening of the pericardium but the extent to which my heart itself has been effected remains to be seen.

What this means is that the heart is able to pump out, but the stiffened pericardium prevents it from adequately expanding to refill. So the blood leaves the heart under sufficient pressure, but the restriction to its expanding means there is a back pressure building on the return side. At the capillary level, the red blood cells are being pushed into the tissues of my organs, but meeting with a backlog of unoxiginated cells waiting for the “pull” of the expanding heart to haul them back to the heart and ultimately the lungs. The tissues don’t get the oxygen they need and begin to degrade. Unchecked and this would no doubt ultimately lead to major organ failure – though I’m a ways from that at the moment. In fact, other than my liver, my other organs seem to be working fine – including my questionable kidneys (knock on wood.)

So the question now is what can be done. Next Tuesday, I’m scheduled for right and left heart catheterizations. They’ll go into the heart with sensors (via the neck for the right side and via the groin for the left side,) and take pressure readings as well as inject dye and watch it on the monitors. This will help determine exactly what’s going on and where the problems are. If it turns out that the pericardium is the primary culprit, then the simplest solution would be to simply cut a slit in the sac and let it open up a bit – thereby allowing the heart to expand normally. As I understand it, it is also possible for them to remove the pericardium completely – though I’m not clear on the particulars as to how and why this procedure would be undertaken. For now, I’m just happy to have a diagnosis that fits all the symptoms and doesn’t involve a return of either of my previous cancers. As soon as I know more, it will be posted here.

Be well.

Chris

Overdue Update

Hey All….

It’s been a long time – far too long.

The following is an update on my current medical situation for those who might be interested. If you’d like to find more timely updates on what I’m doing, feel free to look me up on Facebook under Christopher Hofmann – you’ll find Mel and Zoe there as well (Noah is not old enough yet.)

OK, to truly understand the medical situation as it stands today, you need a little history. Some of you know this story and some do not. Most of you know a little. I won’t bore you with a lot of detail – here are the highlights.

In the fall of 1978 at the age of 14 I was rushed to Children’s Hospital in Boston. A large mass had appeared on an x-ray and my family doctor had no explanation. Up until then I had been a fairly healthy kid – though, now that I look back on it, I can tell you that ADD and anxiety were a very large part of my early years but no one (especially me) had any idea what that meant. I hated school so much that I’d make myself psychosomatically ill in order to avoid the torture that started with getting on the bus. Anyway, back to 1979. I ended up being diagnosed with a rare form of Hodgkin’s disease. It had progressed quite far and I had a large tumor growing around my windpipe and blocking all blood flow out of my head (I had swollen up so much it was hard to open my eyes.) Children’s ran me through some radiation and three surgeries in three weeks and then set me on a course of ten weeks of radiation therapy. At the end of ten weeks, I was declared in full remission and haven’t had issue with Hodgkin’s to date (some 30 plus years later.)

In the fall of 1986 I started to jaundice and ended up contacting my oncologist who had by now moved to Boston’s Floating Hospital for Children, a part of Tuft’s New England Medical Center. He ran me though an ultrasound that revealed a blockage in my primary biliary duct. Ultimately, I was diagnosed with a Klatskin Tumor – a fibroid tumor likely caused by the radiation of eight years prior. I waited until the evening of January 24th for a liver transplant. I cam out of surgery on the 25th – Super Bowl Sunday (the Giants won over the Broncos.) Despite a few minor setbacks, I’ve had a relatively healthy liver for the last 22 years.

In the fall of…..I’m sensing a trend here – no wonder I hate autumn. Anyway, at the end of summer in 2005 when I was scheduled to finally leave Massachusetts and join my family in South Carolina, I took ill and was once again admitted to Tuft’s with some inexplicable symptoms. After a three week delay, Mel and I finally left Boston. I had been diagnosed with Type I Membranoproliferative glomerulonephritis. Essentially this is acute kidney failure. There had also been a tentative diagnosis of Constrictive Pericarditis (or maybe Restrictive Cardiomyopathy – they weren’t quite sure which.) When I finially got settled in SC, I got started seeing a series of specialists at the Medical University of South Carolina. We mostly concentrated on getting my kidney function back to normal which has been the case for the last 18 month or so. The heart issue was really just a nuisance and we decided not to deal with it until the symptoms became impactful on my daily life.

And that brings up to date (thankfully it’s not the fall!)

So…around the first of the year I began feeling cruddy and have some of the same symptoms that I experienced prior to my transplant. My liver doctor and I were both in agreement that there was most likely once again a blockage in my liver. Over the last a few months I’ve undergone a number of tests (including blood work, x-rays, MRI, CT scan, PTC, and a biopsy.) All of these have basically yielded no information – there is no blockage; no apparent return of either my Hodgkin’s or Klatskin tumors; no viral or bacterial infections, and no acute rejection of my transplant. In the mean time, my heart function has progressively diminished. I have almost no energy and become quite light headed with even light exertion. Today I saw the Cardiologist. He believes that my liver problems and heart problems are most likely caused by a back pressure issue stemming from my diminished heart function. In his opinion, there is too much pressure on the venous side of the circulatory system and that is keeping blood flow from properly oxygenating my organs (specifically my liver.) In two weeks I’ll undergo a right and left heart catheterization. This should yield some more definitive information about exactly what’s happening inside my heart and arteries.

So that brings us up to date. Though I don’t cherish the idea of heart surgery, I’m glad to at least have a more concrete answer. And anything is better than having to deal with another unpredictable cancer again. Keep your fingers crossed. I’ll let you know how it turns out.

Be well.

Chris