Perhaps a Swift and Strange Restoration of Creation?

January 27, 2003|

Perhaps a Swift and Strange Restoration of Creation?

‘Get Dr. Nelson on the phone…Kathie, yes, this is Dr. De Marco, we’ve got a miracle here…’

(Some of you may have already read this story. I apologize for sending it out again, but I didn’t fully grasp the impact till I rehashed it with known professionals…)

Lately I had been slightly out of breath (remember my trips to the mall, getting lapped by the old geysers?) and having pain along the right rib area. The CT Scan I did last Monday confirmed that I was having problems back there, namely a ‘right pleural effusion of a large size.’ Translation: I had a build-up of fluid in my right lung, in all likelihood either being Hodgkin’s or being caused by the Hodgkin’s.

So then, last Friday, three days ago, in order to determine a baseline measure of how bad the build-up had gotten, I received a chest X-ray. It showed there was a ‘moderate’ effusion on the right side. You could even see it moved on the X-rays I took lying down. There was definite fluid there.

Today I went to St. Elizabeth’s Hospital, to actually get a thorensentisis (I butchered the spelling), a procedure to have the lung drained of the fluid. Dr. De Marco, the Pulmonologist, decided at the last minute that maybe we should do another chest X-ray, just to see what he was dealing with.

He walked in the operating room. I sat there, gowned up, nervously awaiting the needle poke. Supposedly this was an easy procedure with little pain. Needles, though, are never fun. The nurse handed him the X-ray folder. He pulled out the front view. ‘We don’t need to do this. There’s not enough there.’ Huh?

Dr. De Marco shoved the x-ray up on the light board on the wall. Pointing towards a slim line, no larger than a centimeter, he explained that that was the fluid. If there was a moderate amount, it would 3-4 inches deep, he showed with his fingers. The build-up was almost gone. The nurses, resident and myself, we were all confused. Dr. De Marco wrinkled his forward, baffled.

He called my family practioner and friend, Dr. Kathie Nelson. She was just as confused. Neither she nor Dr. De Marco had ever seen such a thing. Pleural infusions don’t just clear up over three days. What happened?

Dr. De Marco gave a great analogy to what occurred. My lymph system in the lung area acts like a drain, with fluid passing through it on a continual basis. The Hodgkins cells acts like hair on the drain, blocking it and thereby causing it not to work. Fluid builds up. With chemotherapy or some other treatment, the hair/cancer is removed, albeit very slowly. In my case, though, something moved the hair/cancer virtually over night. What was the something???

The two grasped for explanations. There was no satisfactory answer. Relieved but mystified, I took off my gown, put on my sweater and left. There was no need for the procedure.

Tonight Kathie and I revisited what happened. The only thing it could have been, we concluded, was the Rituxin. But I’ve been on Rituxin for 6 weeks. Why would it act so fast and abnormally now? Rituxin doesn’t do that.

Later on, I called my personal health advisor and friend, Dr. Alison Amsterdam. Befuddled, ecstatic and reaching for an answer- maybe it was the combination of IVIG (an immuno-booster) I received last Tuesday plus the Rituxin? But IVIG and Rituxin don’t do that. What the heck happened?

Dr. De Marco, his first words to Dr. Nelson, he was exaggerating…right?

I don’t know what to make of it. I am as skeptical as you are about modern-day miracles. But something happened, and it’s incredibly unexplainable, so for now I’m calling it something different- ‘a swift and strange restoration of creation.’

And, coincidentally, one of the first things Kathie and Alison both asked was, ‘Who was on the Prayer Calendar over the weekend?’ 🙂

Expectancy Confirmation Model

One of the first things Barbara Kahn taught us in Marketing 211 was the expectancy confirmation model. The textbook definition goes something like this: consumers form beliefs about product performance based on prior experience with the product and/or communications about the product that imply a certain level of quality, if the quality is not met negative affect occurs. Huh? Academics always have a way of muddling the most simple of concepts. Practical translation for the rest of us: Manage your expectations- don’t overpromise or your customers will be disappointed.

So, going into my latest round of PET and CT Scans I thought of the expectancy confirmation model. ‘Manage your expectations, manage your expectations…’ I thought to myself. I was feeling good, so I could have been thinking that the scans would turn out good, but not completely clear, of course. Rather though, I could really ratchet down my expectations for the scans. I was pretty messed up the last six weeks, they could be really bad. But the Rituxin had been working so well. ‘Hmm…manage your expectations, manage your expectations. Don’t get your hopes too high, rather be pleasantly surprised than disappointed.’ I thought to myself. I had already burned myself in November. No need to do it again.

I was glad I did. Things turned out as I expected. There was minor cancerous activity along the spine, a few active nodes in the groin area, and a node or two in the lungs. Certainly not good results, but certainly not horrible.

So what next? Well I feel good, on the whole. There are always side effects to deal with, but no use in complaining about those. The Rituxin has been working, so we decided to continue two more weeks of treatments. (By the way, to answer your questions, click here to learn more about Rituxin, an absolutely amazing drug). After those treatments, I have a few options left. The most viable are Phase I and II drug trials. I’ll try my best to explain this next section in layman terms. Remember, academics (of whom many are doctors) always have a way of muddling the most simple of concepts. 🙂

Phase I and II drug trials are like science experiments you would find at any elementary school science fair, minus the backboard and fuzzy felt letters. It’s an experiment, only the stakes are higher as humans are involved as the subjects. Pharmaceutical companies, universities, and research hospitals find patients like myself, who are beyond the realm of normal treatment options, and give us newly developed drugs and treatments. They then monitor us like hawks, looking for different things, all based on what Phase the trial (experiment) is in. So, for example, in a Phase I study they see how much of the drug they can give you before you get sick from it. (Not a fun trial.) In a Phase II study, they are studying the potential side effects of the drug. (Potentially not fun either, but better than Phase I.) In a Phase III, they test to see if the drugs successfully work on the majority of humans. So, yes, the drug may not even work. But it may work. If you have no other options, these trials are the best option.

The study most applicable to me is called a new drug called SGN-30. It is a drug similar to Rituxin, but for Hodgkin’s Disease. It’s a remarkable drug, which if successful, would appear to render chemotherapy in lymphoma obsolete. How amazing would that be? Here are a few links from the business world
and from KSN in Wichita (go all the way to the bottom)
about the last trial on SGN-30.

In a few weeks/months they’ll start Phase II up. Hopefully I should be included in the study. If not, there are other studies, but this is the one I’m banking for.

That’s the latest news. I am thankful for all your prayers and thoughts and everything. I feel much better now. Let’s hope it stays that way.

All New Features…

January 17, 2003|

All New Features…

First, just want to thank you all for your many prayers and thoughts. I feel much much better. The Rituxin drug is doing quite a job and my pain has subsided to nil. I still have withdrawal issues from my getting off the pain killers, but I’ll take the withdrawal issues over that pain anyday. I have much more to write on the whole subject of body, mind, and spirit, but that’s for next week. So please rest assure I am doing better and I that I look forward to kicking some old geyser butt at the mall this afternoon when I go walking. Yeah!!!

Also, please check out the new features on the left- the Prayer Calendar and Art’s Apps. From now on, instead of checking the site everyday, you will get an e-mail whenever I update the site. How cool is that? You must sign up with a username, password and click “sign up for updates” to get this feature. Do it today! Much props to Patrick for that awesome feature. Please take a moment and register yourself for those features.

Let’s pray for some good scans Monday…

Things change at the last minute

January 8, 2003|

Things change at the last minute. Always. Welcome to the health care business. I was supposed to be in New York City this past week for a few tests and to meet a new doctor, but at the last minute I was told to stay home for two weeks until my doctor got back from his vacation. I am glad I did- it was the best football weekend in years in the Canning household as Ohio State and the Steelers won in dramatic fashion.

More significantly though, I am feeling much better. The pain has lessened which has led to a decrease in pain meds which means I think straight again. Not having pain also is beneficial because allows me to recoup my strength. Everyday you can find me at Wal-Mart or at the Mall walking around. Of course the old people are there at the mall, walking at all hours with the headbands and sweatpants. Nothing is as embarrassing as getting lapped by some old fogey, but everyone has to start somewhere, I guess. I still have bad whole body chills and night sweats, but those are a tad more manageable.

Now that I can think straight I can elaborate more on what’s going on. This should help clarify my frustration and (frankly) my pessimism. Back in November, when I was feeling healthy, I had a phenomenal plan that somehow dropped in my lap. I was going to start Gordon-Conwell Theological Seminary (in Boston) in June. Before then, to save money, make money and keep in the insurance company’s good graces, I was going to move home to Ohio in December. I had a few leads to teach, a church willing to let me intern there, and a few classes to take online, so as to get a jump on my education. It was almost too perfect. Deep down I knew it would never materialize. These things just don’t happen in my life nowadays. Everything has to be an adventure.

I did move back to Ohio anyway, which has proven an asset. As for the rest, it’s all up in the air. I may get a call requiring me to head back to New York. Who knows where I’ll be in a week?

Frankly I’ve had it with all this. I’m frustrated to no end. I keep asking God to give me a freakin’ break. Not happening, that’s for sure.

To make matters worse, this is it. I’m not sure if I wrote this earlier, but there is no more chemotherapy, transplants, anything. There are few trial drugs out there that may work, but I am out of options. It doesn’t get much more frustrating than this- to finally have your life together and then have it all crumble overnight with a highly probable death sentence at the other end. What more can I ask for? God, just give me a freakin’ break, a freakin’ break.


Beat Up and Beat Down

January 1, 2003|

Beat Up and Beat Down

It’s been awhile since I last wrote. For that I apologize, but it has been some trying times. Today is really the first time that I have had the necessary energy to catch up on emails and write. It’s been a battle. The pain in my hips and back has been unbearable. My only relief was a few pain-killers mixed with a hot bath. Nothing was worse than finding that we had run out of hot water. It was demoralizing.

I also started getting these amazingly uncomfortable bouts of chills. These keep me grounded at home, as they attack at anytime. In the middle of family parties, watching movies, etc. I would get an attack and that was it. After a few Tylenols and latching myself to heater do they go away.

To make things even worse, the classic Hodgkin’s symptom of night sweats started last week. In the middle of the night, you wake up and you are drenched. It is so uncomfortable. Wake up, change clothes, get more towels for the bed, it’s a mess.

My nights typically consist of all three. It’s been a nightmare, I dread going asleep. I may get 45 minutes of sleep before one of them flares up.

The only consolation is that I moved home to Ohio (which I was planning to anyway a few months ago when I was healthy) and am in my original comfortable bed.

NEW Up Next

I have a Rituxin treatment tomorrow here in Youngstown. In two weeks I make a quick trip to New York to have a few scans done and to meet a new doctor who has a possible new therapy for me. There are not many therapies available to me, so we can only hope that I qualify for this one. Not sure what happens next. Wish I had more good and encouraging news.