February 17, 2003|
Billy part II
I’ve been wanting to write this update for three weeks now. Every time I sat down ready to write it, the details changed in the story. For example, I was told that option X was the best treatment option available to me. A few days later I received a call telling me option X was no longer available. Then option Y came into the picture. But a day later option Y was discovered to be no better than option Z. So let’s go with Z. But…
It was a slightly maddening time. Everyday lent itself to a new opinion, a new fact and more data. Finally, the decision needed to be made. Time was running short. So with the counsel of Dr. Perales, we decided to do an infusion of Billy’s T-cells.
What’s a T-cell infusion? My immune system (Art/Billy’s) doesn’t recognize the Hodgkin’s cancer cells as foreign evil invaders. Consequently, those cancer cells are just hanging around in my lymph system, disrupting my body’s natural flow and causing me massive pain. Billy’s immune system (Billy’s), we think, will recognize the Hodgkin’s cancer cells as foreign evil invaders. Therefore, by giving me more of Billy’s T-cells, which are the baby cells that mature into your immune system, we think that those cells will attack the cancer cells. It’s like getting reinforcements in the middle of a war.
This is a relatively easy procedure, just a simple blood transfusion done on an outpatient basis. Billy has little to do also, just one trip to the hospital where he’ll donate a pint or so of blood. There are many side effects that could occur, which is why we balked at doing this earlier in January. If Billy’s cells enter my system, and don’t recognize my system as being the good guys, they’ll attack my cells too. The liver and kidneys are the first to be attacked, causing eventual shutdown. Graft vs. Host Disease is next, as T-cells start attacking my skin and colon. If those above were to happen, I would be put on high dose steroids, which have their own side effects, further exacerbating my problems.
But, the good news is that this infusion treatment has been proven to work as a curative option, unlike many of the other options. That’s what I was looking for- a proven curative option.
I was supposed to receive the infusion last week, but Dr. Perales was concerned about my pain, which intensified as the week progressed. He got me into see a pain specialist, who helped significantly. Unfortunately I still have that increase in pain this week. It will only be eradicated when the T-cells start working, so before then I am back on painkillers. (I apologize ahead of time if my work suffers, the painkillers really do a number on my brain.)
So here we go again… just please pray for strength to deal with the pain and that the infusion would work. Thank you.
P.S. Make sure to check out the details on the Art Canning Foundation, located above. I hope to see you all there.
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.
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…
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.
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.
December 13, 2002|
The latest test results came in. They weren’t a shock or a surprise, given the current circumstances- incredible amounts of pain, dry itchy skin and swollen lymph nodes. The Hodgkin’s Disease had returned.
There wasn’t anything I did or didn’t do to bring it back. Instead there were just a few Hodgkin’s Cells floating around that hooked up with each other and multiplied. It’s so amazing how it virtually happened over night. I had a phenomenal autumn, having gained most of my weight back and gotten into decent physical shape. One day, that’s all it took. The blip showed up on the PET Scan, the nodes swelled and the pain grew.
I started treatment immediately. Yesterday I had the first of four weekly infusions of Rituxin, a drug, that has some success against such reoccurrences. After the Rituxin there are few options available. Maybe get a second infusion of Billy’s cells. Maybe do low dose chemotherapy. Not much more. I can’t do any more transplants or high-dose chemotherapy regiments. It would probably kill me.
I’m extremely disappointed and hurt. Just as things were turning a corner in my life, this happens. Running out of options. Running out of time. Running out of hope.
December 9, 2002|
Two weeks ago, a few days after receiving my “good” test results, I felt an unusual pain in my groin area. Upon further examination, I discovered a number of swollen lymph nodes. They didn’t bother me too much, evident by the fact that I was out dancing with a bunch of friends till 2:30am that Saturday. Gradually the pain increased. My doctor became very concerned. Before I left for Ohio for Thanksgiving, I spent almost all day Tuesday at the hospital getting tests done, including a needle biopsy with a surgeon. The biopsy proved inconclusive, so I was put on the docket for a real biopsy (surgery where a lymph node(s) is removed).
In the meanwhile the pain has increased greatly. To combat the pain, I have been put back on some serious pain killers. Typically I am in one of three states nowadays- asleep, in pain, or high. I haven’t really left the house for a few days.
Last Thursday morning I had my biopsy. It went quite well. Thankfully my parents came in and have been helping me. They’ll be here until we get the results, which should happen on this Wednesday. It could be anything from a reoccurrence of the Hodgkin’s Disease, to a really strange infection, to a weird virus, to a new type of cancer.
Thank you for your calls and emails of concern. I appreciate you much. I don’t know what to make of all of this and have no freakin’ clue as to what is going on.
November 19, 2002|
So we got some strange strange results today. Let me preface by saying that I feel absolutely fine, have no symptoms, and have even put on 8 lbs. in the past three weeks. So it came as a tad bit of a suprise when we got the results. The CT Scan came out absolutely clear. Didn’t expect that. The MRI came out absolutely clear. Expected that. But the PET Scan showed a node lighting up in the lower right rib cage. Just one. Not even a big one. Not even brightly. It’s just a blip.
Dr. Perales had no clue what to make of it. The PET Scan is the most sensitive of the scans, but, as he said, it’s too sensitive sometimes. He was puzzled as to what it could be. I have no pain there, it doesn’t show up on the CT Scan or the MRI, what the heck is it?
As my dad says, “Nothing can ever be easy with Art.” 🙂 So, what do I do? Other than getting my quarterly scans a few weeks early (December 27, for those keeping track at home), nothing. Keep on moving onward with my plans. Dr. Perales said to go forward. That’s good.
But frankly it is frustrating. Why? I would like to think that I would be able to fix this. Exercise, eat right, get plenty of sleep, something, anything- I would do it to erase this blip. But there is nothing I can do. Nothing. I must have asked Dr. Perales a half-dozen times what I could do. He replied the same answer everytime: “Nothing.” What will happen will happen I guess.
That’s all I have for now, I’ll keep you posted as I get more information. For now though, it comes down to December 27. Pray for the blip. Pray for the blip.
November 13, 2002
‘Oh Art…the funeral was horrible. So many people…all so hurt and wondering why God took Scott (or as his students referred to him, Mr. Scott). You know, older people (adults) can maintain their composure at times like this…at least most can. But seeing those kids…seeing them crying and hurting and asking “Why” was the worst part of it.’
Last week a high school classmate of mine passed away from a heart attack at the age of 25. Scott was a gigantic mound of a man, one of two twins who roamed the offensive line of our football team. Even though I haven’t seen him in more than five years, I can still visualize his giant devious grin that was constantly present on his face as it was yesterday.
From what I understand he was healthy and living a normal life. A few friends e-mailed me about what happened. One e-mail, from my friend Vince (my esteemed editor, whenever I get around to writing my book) particularly hit home, especially given the significance of this week (my 9-month scans). It read:
‘…I did, in fact, go to the funeral. I blew out of work early on Wednesday, leaving around 3 p.m. I had Thursday off for the funeral. When I told my co-workers I had to go back to Youngstown for the funeral for a high school friend, they thought it was my friend who had been fighting cancer for the better part of the past three years (that’s you, dumb***!). I told them that actually, you had a doctor’s appointment on Tuesday, and if we all said our prayers and ate our Wheaties, the doctor would tell you that you were in remission…’
At first I just laughed- typical Guerrieri sarcasm. A day later, though, it struck me. This was serious business. Statistically-speaking- that should have been me. I soon realized that I had, in a sense, cheated death. Ashamedly, I haven’t appreciated or savored it. I forgot where I’ve been. It’s my human condition. It’s all of our human condition. We have short memories.
The ‘Why’ Question
It’s all too familiar. I’ve been thinking about it constantly for the past three years and frankly I don’t have an answer for my own situation, let alone anybody else’s. Why do such tragic things happen?
I only know of three sufficient thoughts for such a question. They’re not answers. Honestly, I’m not sure what they are. Regardless, I munch on them frequently.
1. God knows what He’s doing. In the oft told story of Job, when Job asks God the question ‘Why?î how does God respond? He goes off on Job asking him if he understands the workings of God’s physical creation. Job has no clue. Then he gets it. We don’t have the mind of God nor the ability to comprehend God, and therefore we don’t know why. Only He does. We just need to trust in His judgment. Scary, for sure. Reminds me of what CS Lewis wrote in ‘The Lion, The Witch and The Wardrobeî allegorically speaking about God.
‘…Said Susan, Is he- quite safe?’… Safe?’ said Mr. Beaver… Who said anything about safe? Course he isn’t safe. But he’s good. He’s the king, I tell you.’
2. There is a question that is answerable. ‘Why?’ is a question of the past. We can’t change the past. We can change the future. Therefore, really, the question should be ‘to what end?’ To what end can I/we/God create good out of such a situation.
3. ‘Jesus wept.’ It’s the shortest verse in the Bible. Perhaps it is one of the most profound. Where is Jesus weeping? It’s at the home of a friend of his who just died. What kind of a god weeps? A weak god? A wimpy god? A god who is helpless to help alleviate human suffering? Contrary. It’s a god who suffers. Suffering is an inevitable part of love. We have one who knows more than we do and yet suffers with us in the moment. What a comfort that can be.
Tuesday is my big day. Unlike at the six-month test, I am not nearly as nervous or concerned. I feel good. Will that be reflected in the tests? We’ll see. Maybe I’ll cheat death once again.
October 30, 2002|
Sweatin’ With the Oldies
“Up, one, two, three, four, good, now chair squats- one, two, three four…now lift those arms high, reach, reach, reach, reach…”
A few weeks back I came to a conclusion: I wanted to join a support group. I figured I had the free time, the desire to talk and the desire to listen. It would be nice to meet others in the same predicament as myself. Perhaps it could even be a cathartic experience.
So I called the Post Treatment Resource Center at Memorial Sloan Kettering, intent on finding a group. Is there a group for twenty-somethings I could join?’ I asked. ‘Frankly, we can’t let you in it,’ the social worker said, ‘You would scare the other participants. You’ve been though too much. These kids are just getting through their first round of treatment and are having enough trouble. If they see you, their minds could start working, and they would freak out. But we do have another group for you. It’s on Mondays from 3:30 to 5:00. It’s a holistic treatment group- nutrition, physical therapy and all. You’ll love it.’
I was a tad concerned. Who the heck is able to get off work at 3:30 to come to a support group? I soon discovered the answer.
Let’s just say I brought the mean age range of the group down to the seventies. Alas, the median, it is still stuck in the eighties.
That’s not to say the group is not great. I am just the young whippersnapper.
So every Monday afternoon the octogenarians and I pepper a nutritionist with questions. ‘Is the Atkin’s diet healthy?’ ‘Are vitamins necessary?’ ‘What are the best foods for gaining weight?’ ‘What are the best foods for losing weight?’ ‘What are the best foods to ‘cleanse’ the colon?’ ‘What are the best foods to eliminate flatulence?’
Patiently, and with much understanding, Donald, our nutritionist answers all of our questions. It’s an answer, though, filled with a gusto and passion that could only come from a man who has a degree in Nutritional Anthropology. (Yes, such a course of study exists.) Slowly, I am finding myself learning more and more about cuisine, cooking, and calories. The proof? I am eating healthy while gaining weight (2 lbs in two weeks!). I still slather all of meals with Ranch dressing and American cheese singles, but it’s low-fat Ranch and low-fat cheese singles.
Next Donna comes in, ready to pump us up. OK, perhaps pump is too strong a word. Rouse? Stir? Budge? Whatever the word- she comes in with a challenging routine of low-impact aerobics. By the end of the set the group is wheezing, winded and hunched over. Except me. And darn well I shouldn’t be. Why?
a.) I’m 24.
b.) I rollerblade or lift for 45 minutes a day.
c.) I’m 24.
I usually modify the routine by adding weights. Then it gets difficult. ‘No more squats! No more squats!’ I scream from the safe confines of my house, as the neighbors peer in the window wondering what the heck is going on.
Do you know what is most astounding? Of all the participants, I am the one with the most experience with cancer; I have been through the most! I’m 24! The young whippersnapper! I probably scare them too.
I passed two random but significant moments in my life.
For the first time in three years I played a game of touch football while hanging with the boys in Chicago. Promptly, on the first offensive series, I threw an interception. It was the most enjoyable interception I have ever thrown. I can play football again. That alone is revolutionary.
I found a large accumulation of hair in my shower drain. It wasn’t from Davi, my roommate. He is quite closely shorn. We haven’t had any guests in awhile. It must have been from…me? I can clog the drain again. That alone is revolutionary.
Frequently I get e-mails from readers which read like this: ‘Art, where is the latest update? You haven’t updated in three weeks…Helloooo!’
So Webmaster Patrick and I recently converged in a melding of the minds during our boys’ weekend in Chicago. Out of that pow-wow, we came up with new ideas to freshen the web site. Look for some new features to appear, especially on the e-mail front. We hope to have a list-serve function that will alert you via e-mail when I have updated the site with a new entry or new pictures. No more frustration at lack of a new update. Are you excited?
No, I’m not pregnant. Rather my nine-month check-up has arrived. On November 11, I have a date scheduled with three different suitresses- Miss PET Scan, Miss CT Scan and Ms. MRI. It’s a big day. I hope to impress them all- hoping to hear from all of them those precious words, ‘all clear.’ A clear scan? I can be healthy again. That alone would be revolutionary- especially to a young whippersnapper like myself.