Days 16 - 23 - The Routine Begins

Ok, I'm way behind on these postings so I'll try to bring you all up to date as quickly as possible.

Day 16 – This day went exactly as planned. Mostly uneventfully. I had blood labs drawn at 8:00; saw the Doctor at 9:00; and started chemo right around 10:00. As it turns out, my hemoglobin was fairly low (7.5) which as Dr. Chin put it is really borderline. But instead of delaying chemo in favor of a transfusion, the doc decided to go ahead with the chemo and keep me on schedule. The doctor decided to start me on a low dose of only one medication to see how well I would tolerate it. Chemo went well and I didn't get sick at all during the actual infusion and I felt pretty good afterward. It wasn't until Friday (the next day) that it hit me. I got very tired on Friday and started to feel fairly sick on Saturday. On top of that, I collapsed twice on Saturday after having climbed the stairs.

Day 19 - By Sunday I wasn't feeling any better and my lightheadedness continued. Mel called the Oncologist on call and chatted with him. They decided that I should head to the emergency room. That visit revealed that my hemoglobin had dropped even lower to 6.7. The decision was made to admit me and give me two units of blood. I was all for the transfusion but not so excited about having to stay overnight to do it. In any case, my hemoglobin level came up to 9.5 and I was released on Monday.

Day 23 – Back to the Cancer Center for another Thursday round of labs, doctor, and chemo. The blood work showed that my hemoglobin had held it's level. This is good news as it means there is no major internal bleed. The doctor decided to keep me on the same dosage of chemo. Again, the actual infusion went very well but the two days following were pretty much the same as last week. I slept through most of Friday and today I've been fairly sick most of the day. I also stood up to fast a little while ago and collapsed again. I do hope that doesn't mean my hemoglobin has dropped again. Time will tell. I get labs again first thing Monday morning and see my Kidney doctor on Monday afternoon.
I'll know then what my blood counts look like.

Interesting side note -
On Day 16, Mel took a form for the Family Medical Leave Act with her that the doctor needed to fill out. We left it with the nurse and she returned it all filled out while we were waiting for chemo. We decided to leaf through the document while we were waiting. All the questions were very neatly and succinctly answered in what was obviously the nurse's immaculate handwriting. That was until we got the last page. There at the bottom was a space for the doctor's official diagnosis and signature. This is were the doc had scrawled (in typical doctor handwriting,) “Patient has terminal stomach cancer.” Now up to this point we had been using terms like inoperable and incurable but no one had yet used the term Terminal. It's not like we didn't know that, it was just a little shocking to see in print like that.

And for those who have offered help of rides – I'm looking for a one way Monday afternoon ride from my house in Goose Creek to Mel's office downtown on Wentworth (right next to Andolini's.) I need to leave Goose Creek around 2:30 and arrive about 3:00. Mel gets out of work at that time and she'll drive me to my afternoon appointment and then home.

Be Well
Chris

Day 9 - The Plan

OK, so I'll just dive right into this (as there is really only a "deep" end.)

This morning Mel and I drove down to MUSCs Ashley River Tower so I could get a CT scan of my chest, abdomen, and pelvis. Other than the really disgusting stuff I had to drink before hand, this all went off without a hitch - lasting only about 10 minutes total for the scan. We then moved the car to a different garage a couple of blocks away so as to access the Hollings Cancer Center. This is where my first meeting with Dr. Chin the Oncologist was to happen. Everything timed out perfectly and we arrived right on time. Oh, interesting side note and the first benefit realized from my Handicapped placard - they can't charge you for parking in downtown Charleston if you're handicapped. Free parking - find that in Boston!

In any case, we met with Dr. Chin. We both liked him very much. He seems more than qualified and didn't talk down to us. And, as Mel says, "He doesn't look twelve" like so many of the doctors I saw while in the hospital did. Here's what I we know:

I've got Stage IV Adenocarcinoma. The tumor is located on the top outside of the stomach near the bottom of the lungs and the liver. The tumor is surrounded by fluid that contains abnormal cells. It's because of this fluid and the spreading cancer cells that the cancer is considered Stage IV which essentially means it is in-operable. At this point, surgery is not an option and most likely never will be. A cursory look at my CT scan shows no cancer in either the lungs or the liver but there are some "suspicious" masses growing on the outer lining of my small intestine - further analysis is needed. As the only true cure for Adenocarcinoma is surgery and as that option is not available, we will concentrate on prolonging my life (at a decent quality of living) for as long as possible. How long that will be remains to be seen. There are five types of chemotherapy that are useful against this type of cancer but two of them rely heavily on the kidneys to filter them out so we'll avoid those until my kidney function edges back closer to normal. Of the other three, two are filtered primarily through the liver. We'll start by trying one of these and then, depending on how well I tolerate it, move on to a cocktail of two or three. Usually the chemo would be administered every two weeks, but given my weakened state, the Doc decided it would be better to administer lower doses weekly. He thinks I will tolerate it better. I go back in a week to have some blood work, review the treatment plan with Dr. Chin, and then receive my first dose of chemo.

I think that's everything. Keep the good thoughts and prayers coming.

Be Well.

Chris

Day 5 - No News / Good News

Earlier today I got a phone call from one of the nephrologists (kidney doctors) who told me that my blood labs from yesterday showed continued improvement with my kidneys and that I no longer needed dialysis (yeah!) I am now to be followed by my regular nephrologist in clinic on a regular basis. This is the good news for the day.

I also received a phone call from the Oncology department regarding an appointment on Tuesday. I'll go in and first have a CT scan and then have an appointment with Dr. Chin. I am hopeful that we will have some answers regarding treatment and prognosis after this meeting. Good, bad, or otherwise - I don't care at this point, I just want to be able to move forward with some knowledge. I want to know what I'm up against.

Sometimes no news in not necessarily good news. That's fine - just give me some news; any news.

I doubt I'll post again until after my Tuesday appointments.

Be Well.

Chris

Day 3 - The Label

So with a new day comes a new attitude. I'm in a much better mood than I was yesterday. Thank you to everyone who left encouraging thoughts in response to my previous post.

As of today I still haven't heard anything from the hospital regarding my followup appointment with Oncology. I called a contact at the hospital and told her that I didn't really feel like time was on my side in this case and that I was going a bit stir crazy waiting for some word regarding my pending appointment. Hopefully that will yield some results.

In mail today came my bright shiny new Handicapped Placard. I was happy to receive it as long distance walking is still quite taxing on me. But I found it mildly disturbing to refer to my self as handicapped. All of a sudden the word takes on a new, slightly derogatory meaning. I can understand why people prefer to be referred to as disabled. I'd much rather be disabled than handicapped. In fact, there are a whole slue of labels I'd much rather have - disabled; other-abled; irregular; heck, even slightly damaged goods would be better than handicapped. Oh well, I guess I'll have to live with it.

I ran down to Lowes to get a blade for our mower and took my placard with me. The only thing stranger than being referred to as handicapped is actually using a handicapped parking space. I was so paranoid that everyone was looking at me and saying, "That guy doesn't really look handicapped." So, just to be sure, I shuffled along dragging on leg in a Verbal Kint sort of manner.

You all will know more when I know more.

Be well.

Chris

Day 1 - And So The Journey Begins

Yesterday, August 23, 2010, Mel and I arrived at MUSC's Ashley River Tower at 7:00am so that I could have an Endoscopic Ultra Sound of my stomach. This test was ordered because of a 6 cm polyp that was discovered during a previous Endoscopic foray into my GI track. The Docs got a piece of the polyp but they weren't convinced they had the whole story and wanted a better look. The EUS would afford them the opportunity to see through the stomach lining and into the tissue beyond.

We were registered quickly and taken back to the prep/recovery area. An IV was started and some blood was taken for labs. Everything was going as planned until the labs came back. It turns out my hemoglobin was too low (6.2) for them to do the procedure. The EUS would have to wait until after I could get a couple units of blood transfused into me. The good news from the labs was that my kidneys were working well enough for me to not need dialysis (for those who are keeping score, I haven't needed dialysis since last Wednesday - yeah!) At first the plan was to admit me to the hospital for the transfusions and do the EUS the day after but Mel put her foot down and said, "No." She made them figure out a way to do everything as an outpatient (thank God she was there.) And, in fact, once they had done as she requested, it turned out that I could get the blood I needed and still have the procedure done on the same day. So I sat for about three hours in a most uncomfortable reclining chair while the blood slowly dripped into my veins. For those of you who have never had a transfusion, let tell you that there is no better drug for making you feel better, stronger, healthier than human blood. It really is the elixir of life. Before my transfusion I could barely make it from the wheel chair to the recliner - afterward I felt like I could jog back to the waiting room. Great stuff blood - those vamps know of whence they speak.

But the transfusion is not the reason for this diatribe. No the real story lies in the results of the EUS. The procedure itself went quite well. I was put under a general anesthesia (thankfully) and the whole thing came off without a hitch. The procedure took about an hour from beginning to end and this afforded the doctors plenty of time to poke and prod and snap pictures and buy souvenirs and try to find a reason to justify this little trip into my digestive tract. As it turns out, the doctors did find something. Just beyond the lining of the stomach and under a layer of muscle is a layer of cancer cells. They took a biopsy and we'll hopefully know more in the very near future. It is quite possible, and most likely, that this stomach cancer is the reason I've been having so much trouble with my stomach. Now I'm in a holding pattern waiting to hear from the Oncologists so we can develop a plan of attack. Generally the protocol is to try and shrink the cancer and then remove it surgically. Thankfully at least my kidneys seem to be rejuvenating themselves (knock on wood - please!)

I've fought the big C twice before and won but I was a much younger man then. I'll fight this as fiercely as I can but, to be honest, I'm not sure how much fight I've got left. Sometimes, when you dodge a bullet, you end up leaning into another one - one that takes its time manifesting its injury.

Keep the good thoughts and prayers coming. Mel and I are really going to need them. And for those of you in the Charleston area who want to lend a hand in some way - I could use some help finding weekday rides to and from the hospital so Mel doesn't have to give up any more of her vacation time.

Be well.

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.