OK, this quote I really love, but the fact that it's from a Bronte sister seems very, very girlie otherwise I would have used it earlier. The sentiment is there, but pretend somebody cool and manly said it, like Lee Marvin, George Washington, or Steve McQueen.
"No coward soul is mine,
No trembler in the world's storm-troubled sphere.
I see Heaven's glories shine,
And faith shines equal, arming me from fear."
- Emily Bronte, No Coward Soul is Mine
Without getting into too much detail, I have to say that my personal faith in God has been a real comfort to me in this struggle. Although I haven't been deeply religious per se, I've always maintained a quiet belief in and relationship with God that has given me strength and peace. It's difficult to look at all of the favorable circumstances surrounding my cancer and see only chance at work. No, I know that Someone is looking out for me with great love, and I am surrounded by people acting as His agents who confirm it constantly.
With my first week of treatments done, I feel that we're actively fighting my cancer now and already seeing measurable results.
Until now my part in the fight has been keeping a positive mental outlook and doing the best to help my support team and doctors to get me well. Now things are getting more demanding. Sure, my number one job is still to be a chemo drug/radiation sponge, sucking up all the treatments into my body. In addition, I've got a surprisingly tough challenge of eating 2700 calories and drinking 2 liters of water every day.
The calories have been harder because my appetite hasn't been there for me, and I'm trying to avoid sugar (due to dental issues the radiation can bring on). Fortunately, I can still taste food and my throat's not in bad shape, so I can get food down easily . . . it's just like always eating when you're full. I've been shooting for high calorie foods like stromboli, KFC, and other usually unhealthy stuff that's perfect for me now. I do eat fresh grapes, peaches, etc. and they taste so good right now. Apparently I'm doing ok, because at my weigh in today, they found I actually gained weight. My doctor was happy.
Drinking 2 Liters of water a day is a piece of cake for me. I live with bottles of Poland Spring anyway, and generally drink about 3 Liters. So, it's not too tough to drink the water . . . except that it fills my belly and makes it harder to eat. In the grand scheme of things, not a bad challenge to have to overcome.
I'm getting a little bid of red skin on my neck from the radiation. My family is of Southern/Hillbilly stock, so maybe I'm genetically predisposed to this sort of reaction. Seriously though, the hospital has given me cream to help with the radiation burns, and they're not painful at all yet.
What's really remarkable is that I have had no nausea at all now. Generally it would appear by now, so I think I'm very blessed. I have not even needed to take one of my anti-nausea medicines (Zofran). Dr. Sherman's plan to have me take two IV fluid treatments the past couple days has probably helped there, too.
All in all, my energy level and appetite are down, my throat's a little sensitive, and I've got a little ringing in my left ear which probably means Dr. Sherman will reduce my Cisplatin dosage next time. All in all I'd say I'm holding up better than I expected.
Dr. Bar Ad gave me the best news today when she saw me after radiation. She did an exam and she said that she does not need a CT scan of my neck to know that the lymph nodes are already shrinking. She said the progress is visibly and palpably obvious to her.
I really appreciate all the love and support Kristina, my family, Shelly, and my friends have lent this week. It's been nice to hear from cousins and Aunts and Uncles, from the Toleno camp, and Bill's fan club at Poop and Boogies. Your comments always give me a lift!
Friday, September 28, 2007
Tuesday, September 25, 2007
And so it begins . . .
John Milton was a 17th Century British writer and a Cambridge man. He was a very interesting guy who was both a Puritan Republican civil servant and pamphleteer, but railed against censorship and state religion. He's best known for his book Paradise Lost.
"The mind is its own place, and in itself
Can make a heaven of hell, a hell of heaven."
- John Milton, Paradise Lost
Today I went in for my first chemo and radiation treatments. I move forward into battle knowing full well the risks and hardships that are coming. Honestly, they mean nothing compared to the fair chance that I will be able to shake this disease.
Focusing on the nasty temporary and permanent side effects coming my way the next few months does nothing for me. For one thing, everyone reacts differently to the treatments. I'm hoping with my age and fitness, as well as good diet and watchful chemo and radiation docs that I'll have an easier time than most with the treatments. And what if I don't? It still does me no good to dread or bemoan what's going on? No, the only sensible and helpful way to approach this is to be positive, look for and enjoy successes during treatment, and to stay faithful that good things (including a total cure) could come to me.
God forbid, I lose this fight. If I do, why go out depressed and as someone who gave up on life? With all due respect, fuck that. I hope and expect to live, but even if I don't . . . I want to go out as someone who kept the faith, enjoyed the people and experiences he had left, and choose not to dwell on suffering.
Enough philosophy, here are some practical details.
Chemo Therapy
My chemo was at 7.30am, so Shelly, Mikey, and my folks left at 6am to be there. We started our day tired, and we ended it that way. The chemo experience was totally positive. I cannot think of a reasonable way it could have been better. Unreasonable ways? Sure, instant an immediate cure for example. Seriously though, the chemo was great.
I arrived and was quickly taken back to have blood drawn for lab tests. I thought I'd be getting this all done from one IV, but apparently I was going to get stuck twice today: once for blood, once for chemo. In all honesty, I hate needles and would have made a lousy heroin addict. It didn't matter, the lab assistant stuck that IV in my hand to take blood and I did not feel a thing. She was funny and kind and efficient. Perfect experience.
Next, my whole entourage and I rolled into my chemo room. Lucky #7 was our room. The nurses loved seeing such a big crowd come along, especially when some wore Team Dave t-shirts Kristina had made and the "Dave Rocks!!!" banner was hung at the window. Our veteran nurse Deborah got a little misty when she saw that. She knew she was caring for someone who was very loved.
So, Debbie needed to sink my IV needle into my forearm. Again, it was almost imperceptible. Two for two. I'm very lucky to have good and very visible veins. Maybe I should rethink that heroin addict thing . . . nah, I'd have to change my taste in music and everything. Too much bother.
My chemo treatment was a lot briefer than I thought. I'd heard 5 - 9 hour numbers from survivors and my doctors. My session was only 3.5 hours. Frankly, it was a bit of a let down too. No pain, no unpleasant reactions. The only side effects I felt was the need to urinate 6-7 times in that short time, and a passing ache in my kidneys. I imagined they were being wrung like a sponge to get me to urinate and flush out my system.
Our team spent the 3.5 hours in the room watching the silly comedy Saving Silverman on DVD, meeting with our hospital-appointed nutritionist and social worker. Both were helpful, but the nutritionist had more information that I needed.
I'm feeling sorta rundown, but no nausea yet. They say it usually hits around day 3 or 4 and lasts 3-4 days. I'm already taking 2 different meds to control the nausea, and I have 3 other prescriptions to do the same.
Radiation (by IMRT)
The radiation treatment was great, too. Marshall and Dr. Bar Ad met Shelly and my parents for the first time which was nice. He's such a fantastic, positive and committed guy. Having him as our lead Radiation Oncology nurse and technician is a blessing. I've already told you about Dr. Bar Ad, who I absolutely love.
They strapped me into the mask and on to the table, and I felt a bit like an Egyptian pharoah there on the table. The mask was tight, but I closed my eyes and was instantly comfortable. They took some simulation photos real quick, did some alignment to ensure that the radiation beams were correct aimed and then they beamed the rays to my affected nasopharynx, my right side neck lymph nodes, and then to my left side neck lymph nodes (as a precaution). I felt nothing at all.
I was in a relaxed, nearly sleeping state the whole time. Late '90s/'00s Elton John music was playing. Not normally my kind of thing, but it actually helped me relax. I'll have to burn my own disks for future treatments. They are only 20-25 minutes long.
So, I would say my day went about as perfectly as I could hope. A great way to start the fight.
"The mind is its own place, and in itself
Can make a heaven of hell, a hell of heaven."
- John Milton, Paradise Lost
Today I went in for my first chemo and radiation treatments. I move forward into battle knowing full well the risks and hardships that are coming. Honestly, they mean nothing compared to the fair chance that I will be able to shake this disease.
Focusing on the nasty temporary and permanent side effects coming my way the next few months does nothing for me. For one thing, everyone reacts differently to the treatments. I'm hoping with my age and fitness, as well as good diet and watchful chemo and radiation docs that I'll have an easier time than most with the treatments. And what if I don't? It still does me no good to dread or bemoan what's going on? No, the only sensible and helpful way to approach this is to be positive, look for and enjoy successes during treatment, and to stay faithful that good things (including a total cure) could come to me.
God forbid, I lose this fight. If I do, why go out depressed and as someone who gave up on life? With all due respect, fuck that. I hope and expect to live, but even if I don't . . . I want to go out as someone who kept the faith, enjoyed the people and experiences he had left, and choose not to dwell on suffering.
Enough philosophy, here are some practical details.
Chemo Therapy
My chemo was at 7.30am, so Shelly, Mikey, and my folks left at 6am to be there. We started our day tired, and we ended it that way. The chemo experience was totally positive. I cannot think of a reasonable way it could have been better. Unreasonable ways? Sure, instant an immediate cure for example. Seriously though, the chemo was great.
I arrived and was quickly taken back to have blood drawn for lab tests. I thought I'd be getting this all done from one IV, but apparently I was going to get stuck twice today: once for blood, once for chemo. In all honesty, I hate needles and would have made a lousy heroin addict. It didn't matter, the lab assistant stuck that IV in my hand to take blood and I did not feel a thing. She was funny and kind and efficient. Perfect experience.
Next, my whole entourage and I rolled into my chemo room. Lucky #7 was our room. The nurses loved seeing such a big crowd come along, especially when some wore Team Dave t-shirts Kristina had made and the "Dave Rocks!!!" banner was hung at the window. Our veteran nurse Deborah got a little misty when she saw that. She knew she was caring for someone who was very loved.
So, Debbie needed to sink my IV needle into my forearm. Again, it was almost imperceptible. Two for two. I'm very lucky to have good and very visible veins. Maybe I should rethink that heroin addict thing . . . nah, I'd have to change my taste in music and everything. Too much bother.
My chemo treatment was a lot briefer than I thought. I'd heard 5 - 9 hour numbers from survivors and my doctors. My session was only 3.5 hours. Frankly, it was a bit of a let down too. No pain, no unpleasant reactions. The only side effects I felt was the need to urinate 6-7 times in that short time, and a passing ache in my kidneys. I imagined they were being wrung like a sponge to get me to urinate and flush out my system.
Our team spent the 3.5 hours in the room watching the silly comedy Saving Silverman on DVD, meeting with our hospital-appointed nutritionist and social worker. Both were helpful, but the nutritionist had more information that I needed.
I'm feeling sorta rundown, but no nausea yet. They say it usually hits around day 3 or 4 and lasts 3-4 days. I'm already taking 2 different meds to control the nausea, and I have 3 other prescriptions to do the same.
Radiation (by IMRT)
The radiation treatment was great, too. Marshall and Dr. Bar Ad met Shelly and my parents for the first time which was nice. He's such a fantastic, positive and committed guy. Having him as our lead Radiation Oncology nurse and technician is a blessing. I've already told you about Dr. Bar Ad, who I absolutely love.
They strapped me into the mask and on to the table, and I felt a bit like an Egyptian pharoah there on the table. The mask was tight, but I closed my eyes and was instantly comfortable. They took some simulation photos real quick, did some alignment to ensure that the radiation beams were correct aimed and then they beamed the rays to my affected nasopharynx, my right side neck lymph nodes, and then to my left side neck lymph nodes (as a precaution). I felt nothing at all.
I was in a relaxed, nearly sleeping state the whole time. Late '90s/'00s Elton John music was playing. Not normally my kind of thing, but it actually helped me relax. I'll have to burn my own disks for future treatments. They are only 20-25 minutes long.
So, I would say my day went about as perfectly as I could hope. A great way to start the fight.
Saturday, September 22, 2007
Calm Before the Storm
"Think where man's glory most begins and ends,
And say my glory was I had such friends."
- William Yeats
In the past couple days, I've been gearing up for my treatments. It's tough knowing some of the effects, both temporary and permanent, will have on my body. For instance, the delightful experience of eating will never be quite the same for me again. The radiation treatments will damage my salivary glands and leave me with permanent dry mouth, and my taste buds may be damaged for years. There are things I won't be able to eat for many months, possibly years or ever. All in all, a small price to pay to be able to live! I'll make that trade any day of the week, but all the same it's tough to feel like I'm in the last few days of being able to enjoy my meals, desserts, and drinks as I always have.
So, this last week I've been enjoying some delicious meals and treats. Whether it's a delicious filet at Domani Star in Doylestown, sushi at Osaka, a simple cheesesteak or Starbucks coffee, I've been treating myself. I enjoyed a few delicious glasses of Brunello, one of my favorite wines from Tuscany. I've probably put on an extra 10 pounds going into my treatments.
Even better than the food though is the people I've shared the meals with. Mike, Shelly, Kristina, Pierce, Seamus and Kevin all took time out of there schedules the last week or so to hang out, watch a good movie, go shooting, grub down, and share some good cheer. I love my friends, and you guys have no idea how powerful your company is to me right now.
People are always telling me how great my attitude is, and all I can say is look around me. My mom, my friends, my family and everyone around me lift me up time and time again. Come on. Have you met my mom? How could I possibly be anything but upbeat?
Reading the comments my aunts and uncles (and my buddy Bill Meaks) have shared here spur me on, too. It's nice to hear from everyone, and reminds me how many people are pulling for me.
So Saturday, I'm heading up to New York to see Sir Ian McKellen play King Lear. I'm such a huge fan of Shakespeare and that play in particular. I hear that McKellen is incredible. While we're up there, Kristina and I are going to grab a really good dinner in New York, too.
I'm very at peace with the treatments and what is coming. Truth be told, I'm eager to get started so that we can pull all this behind me. Thanks to Kristina, Shelly, and everyone else, I'm really making the most of these last days before the treatment.
And say my glory was I had such friends."
- William Yeats
In the past couple days, I've been gearing up for my treatments. It's tough knowing some of the effects, both temporary and permanent, will have on my body. For instance, the delightful experience of eating will never be quite the same for me again. The radiation treatments will damage my salivary glands and leave me with permanent dry mouth, and my taste buds may be damaged for years. There are things I won't be able to eat for many months, possibly years or ever. All in all, a small price to pay to be able to live! I'll make that trade any day of the week, but all the same it's tough to feel like I'm in the last few days of being able to enjoy my meals, desserts, and drinks as I always have.
So, this last week I've been enjoying some delicious meals and treats. Whether it's a delicious filet at Domani Star in Doylestown, sushi at Osaka, a simple cheesesteak or Starbucks coffee, I've been treating myself. I enjoyed a few delicious glasses of Brunello, one of my favorite wines from Tuscany. I've probably put on an extra 10 pounds going into my treatments.
Even better than the food though is the people I've shared the meals with. Mike, Shelly, Kristina, Pierce, Seamus and Kevin all took time out of there schedules the last week or so to hang out, watch a good movie, go shooting, grub down, and share some good cheer. I love my friends, and you guys have no idea how powerful your company is to me right now.
People are always telling me how great my attitude is, and all I can say is look around me. My mom, my friends, my family and everyone around me lift me up time and time again. Come on. Have you met my mom? How could I possibly be anything but upbeat?
Reading the comments my aunts and uncles (and my buddy Bill Meaks) have shared here spur me on, too. It's nice to hear from everyone, and reminds me how many people are pulling for me.
So Saturday, I'm heading up to New York to see Sir Ian McKellen play King Lear. I'm such a huge fan of Shakespeare and that play in particular. I hear that McKellen is incredible. While we're up there, Kristina and I are going to grab a really good dinner in New York, too.
I'm very at peace with the treatments and what is coming. Truth be told, I'm eager to get started so that we can pull all this behind me. Thanks to Kristina, Shelly, and everyone else, I'm really making the most of these last days before the treatment.
Wednesday, September 19, 2007
Audio Baseline Test
"Trouble knocked on the door, but, hearing laughter, hurried away."
- Ben Franklin
Late this afternoon, I had a doctor's appointment with an Ear/Nose/Throat specialist to do an audio baseline prior to my treatment. Fortunately, there is a good doctor just 3 minutes away at Warminster Hospital.
The nasopharynx is the top of the throat where both the nasal passages and your ears connect with your throat. So, nasopharyngeal cancer often spreads to the ear, causing ringing in your ears, hearing loss, bleeding in your ears and other really unpleasant stuff . . . which thankfully I've had none of.
One of the potential chemo side effects that is critical to measure, however, is whether or not the dose of Cisplatin that I'm receiving is causing me any hearing loss. To that end, Dr. Sherman sent me to see Dr. Maurice Roth, right here in Warminster.
At the appointment, I had a little trouble with the administrative staff and my co-pay. They wanted me to pay double what I've been paying everywhere else and what is printed on my card. Unfortunately, I've seen a lot of terrible administrative people at Penn and Warminster Hospital. Some have been great, but often these folks are rude or just plain bad at their jobs. I imagine it's not an easy or particularly high paying job, and they probably get sick of seeing cranky, selfish patients all the time. Nonetheless, dealing with these folks is more of a pain than all of the needles and post-surgical soreness I've faced. I digress.
Dr. Roth comes in to see me. He says he overheard my conversation with his staff, and he apologized. He also said that any time I came back to his office . . . I would never pay another co-pay. He was a very cool doctor, who asked about my condition. He was very familiar with Dr. Weinstein and the folks at Penn.
Dr. Roth's job today was to test my hearing to see if I'd suffered any healing loss. During my treatment, if I get any ringing in my ears or if Dr. Sherman thinks I need it, he will send me back to have my hearing tested and compared to today's results. At the end of my treatment, I will also be tested. The good news is that my hearing test today showed that I had perfectly normal hearing.
So, great results. Meeting Dr. Roth was a good experience, and life's too short to be worried about the negativity of his office staff. One of the things I've learned is that stress and negativity are always going to be out there. You may have to encounter and deal with it, but there's no reason why you have to carry it with you. I just move on, and leave it behind.
- Ben Franklin
Late this afternoon, I had a doctor's appointment with an Ear/Nose/Throat specialist to do an audio baseline prior to my treatment. Fortunately, there is a good doctor just 3 minutes away at Warminster Hospital.
The nasopharynx is the top of the throat where both the nasal passages and your ears connect with your throat. So, nasopharyngeal cancer often spreads to the ear, causing ringing in your ears, hearing loss, bleeding in your ears and other really unpleasant stuff . . . which thankfully I've had none of.
One of the potential chemo side effects that is critical to measure, however, is whether or not the dose of Cisplatin that I'm receiving is causing me any hearing loss. To that end, Dr. Sherman sent me to see Dr. Maurice Roth, right here in Warminster.
At the appointment, I had a little trouble with the administrative staff and my co-pay. They wanted me to pay double what I've been paying everywhere else and what is printed on my card. Unfortunately, I've seen a lot of terrible administrative people at Penn and Warminster Hospital. Some have been great, but often these folks are rude or just plain bad at their jobs. I imagine it's not an easy or particularly high paying job, and they probably get sick of seeing cranky, selfish patients all the time. Nonetheless, dealing with these folks is more of a pain than all of the needles and post-surgical soreness I've faced. I digress.
Dr. Roth comes in to see me. He says he overheard my conversation with his staff, and he apologized. He also said that any time I came back to his office . . . I would never pay another co-pay. He was a very cool doctor, who asked about my condition. He was very familiar with Dr. Weinstein and the folks at Penn.
Dr. Roth's job today was to test my hearing to see if I'd suffered any healing loss. During my treatment, if I get any ringing in my ears or if Dr. Sherman thinks I need it, he will send me back to have my hearing tested and compared to today's results. At the end of my treatment, I will also be tested. The good news is that my hearing test today showed that I had perfectly normal hearing.
So, great results. Meeting Dr. Roth was a good experience, and life's too short to be worried about the negativity of his office staff. One of the things I've learned is that stress and negativity are always going to be out there. You may have to encounter and deal with it, but there's no reason why you have to carry it with you. I just move on, and leave it behind.
Tuesday, September 18, 2007
Whoops . . Sorry, Dr. Sherman
"Identity is such a crucial affair that one shouldn't rush into it."
- David Quammen, American nature & science writer
I found out something very funny yesterday. Originally, I was scheduled to see Dr. Eric Sherman. He's a big deal in head/neck cancer and chemo. He's in the TopDocs database where they asked Philadelphia area doctors from various hospitals who they would want to treat their family if they had head/neck cancer. He's very well respected. Well, I found out a week before my appointment that Dr. Jared Weiss, who works under Sherman would be my doc. I was disappointed, but was assured Dr. Sherman would still be involved in my treatment and had very close contact with Dr. Bar Ad about my case.
Anyway, when I went in to see Dr. Weiss, I checked in on the 15th floor as instructed. They checked me in, had my chart, gave me a pre-stamped card with my name, and put me in the waiting room. 45 minutes after my appointment was supposed to begin, I walked back up and asked for a reason for the delay. The quickly put me in an exam room and told me the doctor would be right with me. 30 minutes later, still no doctor, so I went back to the front. They said they'd paged Dr. Weiss a bunch of times and he wasn't responding. I'm shocked to learn that he's not even seeing anyone else right now, he's MIA.
I was never crazy about seeing anyone but Sherman, so I tell them that I need to see Dr. Sherman instead and that I'm done with a doctor who blows off his patients. The admin people then admit that they should have sent me to the 12th Floor and send me down there right away. They put me in touch with Dr. Sherman's secretary who greets me and tells me Dr. Weiss will be right with me. They also have a social worker there. I tell them I will not see Weiss and must see Sherman, that I'm fighting for my life and don't want to work with a doctor who is not making me a priority. I insist on Sherman, but they say they'll have to see what they can do.
About 15 minutes later, I'm in an exam room with this guy who is very apologetic. I'm pretty rough with him, but I quickly put that aside and focus on moving forward and being positive. The entire time I had this appointment, as I describe above, I think I'm dealing with Dr. Jared Weiss. It wasn't until last night that Kristina told me it was Dr. Sherman. She saw it on his jacket and my prescriptions were written on Dr. Sherman's pad.
Oddly, I felt a lot better knowing retroactively that this guy is Dr. Sherman.
- David Quammen, American nature & science writer
I found out something very funny yesterday. Originally, I was scheduled to see Dr. Eric Sherman. He's a big deal in head/neck cancer and chemo. He's in the TopDocs database where they asked Philadelphia area doctors from various hospitals who they would want to treat their family if they had head/neck cancer. He's very well respected. Well, I found out a week before my appointment that Dr. Jared Weiss, who works under Sherman would be my doc. I was disappointed, but was assured Dr. Sherman would still be involved in my treatment and had very close contact with Dr. Bar Ad about my case.
Anyway, when I went in to see Dr. Weiss, I checked in on the 15th floor as instructed. They checked me in, had my chart, gave me a pre-stamped card with my name, and put me in the waiting room. 45 minutes after my appointment was supposed to begin, I walked back up and asked for a reason for the delay. The quickly put me in an exam room and told me the doctor would be right with me. 30 minutes later, still no doctor, so I went back to the front. They said they'd paged Dr. Weiss a bunch of times and he wasn't responding. I'm shocked to learn that he's not even seeing anyone else right now, he's MIA.
I was never crazy about seeing anyone but Sherman, so I tell them that I need to see Dr. Sherman instead and that I'm done with a doctor who blows off his patients. The admin people then admit that they should have sent me to the 12th Floor and send me down there right away. They put me in touch with Dr. Sherman's secretary who greets me and tells me Dr. Weiss will be right with me. They also have a social worker there. I tell them I will not see Weiss and must see Sherman, that I'm fighting for my life and don't want to work with a doctor who is not making me a priority. I insist on Sherman, but they say they'll have to see what they can do.
About 15 minutes later, I'm in an exam room with this guy who is very apologetic. I'm pretty rough with him, but I quickly put that aside and focus on moving forward and being positive. The entire time I had this appointment, as I describe above, I think I'm dealing with Dr. Jared Weiss. It wasn't until last night that Kristina told me it was Dr. Sherman. She saw it on his jacket and my prescriptions were written on Dr. Sherman's pad.
Oddly, I felt a lot better knowing retroactively that this guy is Dr. Sherman.
Monday, September 17, 2007
Backstory (Long Catch Up Post)
This is the sort of blog that nobody really ever wants to start. A cancer blog. An "I've got cancer" blog, where you document your battle with a very deadly disease. All the same, having found out that I have cancer, I learned just how much and how many people love and care about me. I think a blog is a great way to tie myself into the support of amazing people. Just as importantly, I've done a lot of web searching to learn more about other people's struggles since I've been diagnosed. Even the scary ones gave me a sense of comfort. I hope that someone else who goes through this later is able to derive some comfort and useful information from my situation. To that end, I'll try to be very honest . . . no sugar-coating, but no building anything up either. I want to share an honest account of this fight.
I'm also going to try to begin all of my posts with a quote. They will probably be all over the map, but hopefully tie in some way to the post. Sometimes they'll just be quotes that amuse me. Today's quote comes from Catherine of Siena, a Catholic saint who lived in the 14th century.
"To a brave man, good and bad luck are like his left and right hand. He uses both."
So how does my cancer story begin?
The last friday of June 2007, I was at Kristina's house and her sister Deanna and her boyfriend Mike were visiting. I found myself very tired and rundown, with my eyes and nose a little watery. Honestly, it felt like every cold I've ever had in my life. Especially because I'd been in a tiny conference room across from a guy who had a nasty cold the day before, I assumed I caught his cold.
The next morning, I woke up and saw swelling on the right side of my neck. Just below my ear and a couple inches long. It hadn't been there the night before.
My mom Linda is a Registered Nurse, and I decided to call her to ask about it. I tried to describe the lump and noted my cold. Just like every time I've called my mom with an ailment, she told me to go to the doctor. She said it could be an infected gland from my cold or even mono.
Surprisingly, I actually made an appointment to see the doctor later that week. Dr. Donna Ott in Warminster. She checked me out, and agreed to try antibiotics for a week. She forced me to make an appointment for a week later if it was not gone.
After a week of antibiotics, the lump remained. I found myself fatigued, but the swelling on my neck was not painful and it wasn't growing. I studied a million possible ailments on WebMd and those sorts of sites. Was it Cat Scratch Fever? A viral infection? Mono seemed really likely. Well, I went back to see Doctor Ott, and she suggested bloodwork, a biopsy and a CT scan. This really shocked me. The whole time I was thinking mono at the worst. I agreed to a blood test for starters to rule out mono.
I went for my blood test for mono and about 6 other things. It's odd to find yourself hoping you have mono, but that's where I was. When the results came back, I found out that I did not have mono. My blood counts seemed normal, my cholesterol was great (surprisingly), and all of my other tests came back good. I figured if I had cancer, it would have showed in the blood test. I had no idea.
My doctor then suggested that we move on with a CT scan, which I got right away. It told us little. There were three swollen lymph nodes on the right side of my neck. The largest was about 4cm. There appeared to be a "slight asymmetry" in the right side of my nasopharynx. What the hell is a nasopharynx?
At this point Dr. Ott admitted that she was out of her league and had me see a surgeon who would take a biopsy of the lymph nodes to test for cancer. Even still, I thought there had to be another explanation for this. I'd never smoked, there was no history of cancer in my family, and I was only 37. Cancer?
All the same, I started learning about every variety of head and neck cancer under the sun, as well as lung cancer. Chilling statistics, dreadful tests and treatments, and all that sort of thing. When I met with my surgeon, I asked him if this could be a reaction to a viral infection and he soberly told me "I'm afraid not." At this point, I could find no other possible explanation for the swollen nodes on my neck, and well before we went for the biopsy at the end of July, I already knew in my heart that I had some sort of cancer.
The biopsy procedure was a little more involved than I'd thought. I had it done at the local hospital in Warminster. Friends in medicine (Kevin, Mom, even a person at Penn's cancer team) had advised that taking tissue samples and having a pathologist read them could be done by anyone. So, I went in for out-patient surgery with my brother Mike and my wife Shelly. They were a great comfort during the surgery. The doctor took a portion of one of my lymph nodes and excised another entirely. What really sucked was that he told us it would take 10 -14 days for results.
During this long wait, it became very difficult not to dwell. I spent a lot of time researching cancer and through a friend of Kristina's a Radiation Oncology Nurse named Marshall, I began to make preparations should I get confirmation of cancer.
About 10 days in, I got a call from my surgeon. Over the phone he told me that I had cancer. I wondered if it was thyroid (90-95% survival rate when caught early) or non-Hodgkins lymphoma (60% survival). He said it was a squamous cell of the head/neck and with neck lymph node involvement that meant Stage IV (the most advanced) and survival rates closer to 20-30%. That was very heavy news to get over the phone.
I shared the news with my circle of loved ones, who all told me they knew I was a fighter filled with fury and that whatever the odds were, they knew that I would beat the cancer. All the same, I heard fear in their voices and saw pity and hurt in their eyes. It was easy to see they were scared. I was, too. Scared but upbeat and determined to win.
Quickly we moved to get in to see people at Penn. I got my slides and CT scan films, and doctor's notes sent over to UPenn through Marshall. The team there conferred and Dr. Voika Bar Ad scheduled an appointment to see me. She examined me carefully and used a flexible scope to check out the inside of my oral cavity and throat. She seemed fixated on my right tonsil. All the same, she really impressed me. She was very professional and from day one I could see she was very committed to me. I can still say with all the doctors I've seen, she is the one who impresses me most. She pulled out all the stops and got me appointments with Dr. Gregory Weinstein, a heavy hitter in the Head/Neck cancer world and an excellent surgeon. She also set me up with Dr. Kendra Schaeffer, a dentist, and Dr. Eric Sherman, a Medical Oncologist (chemo doc).
She called me several times in between meetings and impressed me more and more with her attitude, professionalism and sense of concern.
Dr. Weinstein met with me. He is an expert in much demand. While he was meeting with me, he was called out of the room three times for other patient emergencies. One lucky patient got to hear him say magic words "You do not have cancer." I saw her face across the hall when he delivered the news. I was so happy for her that I forgot about myself for a moment. Dr. Weinstein confirmed my cancer diagnosis and took a quick look in my throat and nose. He noted that we would need to do a PET/CT scan and a biopsy, as well as have a PEG tube installed for feeding. These were standard procedures at UPenn's Cancer Center for Head & Neck cancers. Shelly and Mike had come along, and Shelly described Dr. Weinstein best. "He doesn't like to lose." He assured me and Shelly that he would get me better.
I met with Dr. Schaeffer who took x-rays of my teeth and molds for fluoride trays. The good news was that my teeth were in great shape and would not require any extractions. She was very upbeat and said she'd seen a lot of patients come through and the ones who did well were the ones surrounded by loved ones and young and upbeat like me. My brother and Kristina had come along, and I really appreciated it.
There was a lot of trouble with scheduling my CT/PET scan at Penn. They also had equipment problems which were not helpful. My PET test was not a great experience, but fortunately the results that came back were. Dr. Weinstein had said there were three things we could hope for with the PET test. #1: Nothing would light up on the PET test below the collar bones. #2: Only a single place other than the neck lymph nodes would light up. #3: If we were really lucky, only the lymph nodes would light up. Well, a lot of prayers paid off, because #1 and #3 was what we got! My lymph nodes aside there was little evidence that I had cancer.
By this time, it was the end of August and I went in to have my PEG tube installed and for my blind biopsy of my tonsil (including a right tonsillectomy), nasopharynx, base of tongue, and pyriform. The surgery was not bad, but I woke with sore ribs/stomach from having my stomach ballooned up for the insertion of the PEG tube. My throat was sore in a few places from the biopsy too. Pain medication and ice chips helped keep my pain down to 3 or 4 on a scale of 10 in those places. After a while, I was released.
The PEG tube part of the equation was really not that bad. I had to learn to flush the tube, and get used to having a piece of plastic hanging out of me. The pain was gone within a day or two. It was the sore throat and not being able to eat for a few days that was a bigger issue. I drank fluids and had jello, yogurt and pudding for the first day or so. Soon after I started eating buttery rice and canned peaches and pears. It took about a week before I could stop taking pain medication, but every day I was eating more and more. Pizza, cheesesteak, and so forth. By day 8 or 9, I was a little sore but back to my old eating habits and I could talk again.
I got back to Dr. Weinstein who confirmed that I had nasopharyngeal cancer. A very small tumor and one of the non-keratinizing variety that really responds well to radiation. He stated that my chances of recovery were good and that my treatment would probably consist of radiation and chemo alone. Probably no need for surgery. He said he'd see me in January as my treatments wrapped up.
I went back to radiation and had a clear mask made for my radiation treatments. They made markings so they could begin designing my radiation treatments. Dr. Bar Ad was very clear about what we knew, and she said she was working to cure me. She was very clear about these treatments and that she expected me to get well.
My chemo doctor experience was no fun at all. The guy is Dr. Jared Weiss and there were administrative problems at Penn that meant he was 90-minutes late in seeing me. He works directly under Dr. Eric Sherman, another big hitter. They have a very straightforward protocol for chemo on nasopharynx cancer. Every 3 weeks, I'll receive an injection of medicines including the primary cancer-fighting drug Cisplatin beginning with the first morning I go for radiation. This is for three sessions (Week 1, 4, 7). After my radiation concludes, there will be another series of three sessions with Cisplatin and 5FU. The good news here is that he told me that I should not lose my hair and that pharmaceutical advances and my age/health could make my side effects a lot milder than many patients. There were some possible scary side effects, but none sounded worse than the alternative (death) and most were real low percentages.
So, as it stands now. I'm all set to begin chemotherapy at 7.30am on September 25. Later that day at 2.30pm I have radiation treatment scheduled. The first of 35 (or so) daily sessions of IMRT radition to my neck and nasopharynx.
This is a very long post. Most won't be anywhere near this long, but I was playing a lot of catch up. If you're a newly diagnosed cancer patient, my advice to you is to feel what you need to feel. Ride the rollercoaster, but surround yourself with friends, loved ones, and appreciate life. It's a frightening time, and it's important to breathe in the life around. Laugh, love and live!
I'm also going to try to begin all of my posts with a quote. They will probably be all over the map, but hopefully tie in some way to the post. Sometimes they'll just be quotes that amuse me. Today's quote comes from Catherine of Siena, a Catholic saint who lived in the 14th century.
"To a brave man, good and bad luck are like his left and right hand. He uses both."
So how does my cancer story begin?
The last friday of June 2007, I was at Kristina's house and her sister Deanna and her boyfriend Mike were visiting. I found myself very tired and rundown, with my eyes and nose a little watery. Honestly, it felt like every cold I've ever had in my life. Especially because I'd been in a tiny conference room across from a guy who had a nasty cold the day before, I assumed I caught his cold.
The next morning, I woke up and saw swelling on the right side of my neck. Just below my ear and a couple inches long. It hadn't been there the night before.
My mom Linda is a Registered Nurse, and I decided to call her to ask about it. I tried to describe the lump and noted my cold. Just like every time I've called my mom with an ailment, she told me to go to the doctor. She said it could be an infected gland from my cold or even mono.
Surprisingly, I actually made an appointment to see the doctor later that week. Dr. Donna Ott in Warminster. She checked me out, and agreed to try antibiotics for a week. She forced me to make an appointment for a week later if it was not gone.
After a week of antibiotics, the lump remained. I found myself fatigued, but the swelling on my neck was not painful and it wasn't growing. I studied a million possible ailments on WebMd and those sorts of sites. Was it Cat Scratch Fever? A viral infection? Mono seemed really likely. Well, I went back to see Doctor Ott, and she suggested bloodwork, a biopsy and a CT scan. This really shocked me. The whole time I was thinking mono at the worst. I agreed to a blood test for starters to rule out mono.
I went for my blood test for mono and about 6 other things. It's odd to find yourself hoping you have mono, but that's where I was. When the results came back, I found out that I did not have mono. My blood counts seemed normal, my cholesterol was great (surprisingly), and all of my other tests came back good. I figured if I had cancer, it would have showed in the blood test. I had no idea.
My doctor then suggested that we move on with a CT scan, which I got right away. It told us little. There were three swollen lymph nodes on the right side of my neck. The largest was about 4cm. There appeared to be a "slight asymmetry" in the right side of my nasopharynx. What the hell is a nasopharynx?
At this point Dr. Ott admitted that she was out of her league and had me see a surgeon who would take a biopsy of the lymph nodes to test for cancer. Even still, I thought there had to be another explanation for this. I'd never smoked, there was no history of cancer in my family, and I was only 37. Cancer?
All the same, I started learning about every variety of head and neck cancer under the sun, as well as lung cancer. Chilling statistics, dreadful tests and treatments, and all that sort of thing. When I met with my surgeon, I asked him if this could be a reaction to a viral infection and he soberly told me "I'm afraid not." At this point, I could find no other possible explanation for the swollen nodes on my neck, and well before we went for the biopsy at the end of July, I already knew in my heart that I had some sort of cancer.
The biopsy procedure was a little more involved than I'd thought. I had it done at the local hospital in Warminster. Friends in medicine (Kevin, Mom, even a person at Penn's cancer team) had advised that taking tissue samples and having a pathologist read them could be done by anyone. So, I went in for out-patient surgery with my brother Mike and my wife Shelly. They were a great comfort during the surgery. The doctor took a portion of one of my lymph nodes and excised another entirely. What really sucked was that he told us it would take 10 -14 days for results.
During this long wait, it became very difficult not to dwell. I spent a lot of time researching cancer and through a friend of Kristina's a Radiation Oncology Nurse named Marshall, I began to make preparations should I get confirmation of cancer.
About 10 days in, I got a call from my surgeon. Over the phone he told me that I had cancer. I wondered if it was thyroid (90-95% survival rate when caught early) or non-Hodgkins lymphoma (60% survival). He said it was a squamous cell of the head/neck and with neck lymph node involvement that meant Stage IV (the most advanced) and survival rates closer to 20-30%. That was very heavy news to get over the phone.
I shared the news with my circle of loved ones, who all told me they knew I was a fighter filled with fury and that whatever the odds were, they knew that I would beat the cancer. All the same, I heard fear in their voices and saw pity and hurt in their eyes. It was easy to see they were scared. I was, too. Scared but upbeat and determined to win.
Quickly we moved to get in to see people at Penn. I got my slides and CT scan films, and doctor's notes sent over to UPenn through Marshall. The team there conferred and Dr. Voika Bar Ad scheduled an appointment to see me. She examined me carefully and used a flexible scope to check out the inside of my oral cavity and throat. She seemed fixated on my right tonsil. All the same, she really impressed me. She was very professional and from day one I could see she was very committed to me. I can still say with all the doctors I've seen, she is the one who impresses me most. She pulled out all the stops and got me appointments with Dr. Gregory Weinstein, a heavy hitter in the Head/Neck cancer world and an excellent surgeon. She also set me up with Dr. Kendra Schaeffer, a dentist, and Dr. Eric Sherman, a Medical Oncologist (chemo doc).
She called me several times in between meetings and impressed me more and more with her attitude, professionalism and sense of concern.
Dr. Weinstein met with me. He is an expert in much demand. While he was meeting with me, he was called out of the room three times for other patient emergencies. One lucky patient got to hear him say magic words "You do not have cancer." I saw her face across the hall when he delivered the news. I was so happy for her that I forgot about myself for a moment. Dr. Weinstein confirmed my cancer diagnosis and took a quick look in my throat and nose. He noted that we would need to do a PET/CT scan and a biopsy, as well as have a PEG tube installed for feeding. These were standard procedures at UPenn's Cancer Center for Head & Neck cancers. Shelly and Mike had come along, and Shelly described Dr. Weinstein best. "He doesn't like to lose." He assured me and Shelly that he would get me better.
I met with Dr. Schaeffer who took x-rays of my teeth and molds for fluoride trays. The good news was that my teeth were in great shape and would not require any extractions. She was very upbeat and said she'd seen a lot of patients come through and the ones who did well were the ones surrounded by loved ones and young and upbeat like me. My brother and Kristina had come along, and I really appreciated it.
There was a lot of trouble with scheduling my CT/PET scan at Penn. They also had equipment problems which were not helpful. My PET test was not a great experience, but fortunately the results that came back were. Dr. Weinstein had said there were three things we could hope for with the PET test. #1: Nothing would light up on the PET test below the collar bones. #2: Only a single place other than the neck lymph nodes would light up. #3: If we were really lucky, only the lymph nodes would light up. Well, a lot of prayers paid off, because #1 and #3 was what we got! My lymph nodes aside there was little evidence that I had cancer.
By this time, it was the end of August and I went in to have my PEG tube installed and for my blind biopsy of my tonsil (including a right tonsillectomy), nasopharynx, base of tongue, and pyriform. The surgery was not bad, but I woke with sore ribs/stomach from having my stomach ballooned up for the insertion of the PEG tube. My throat was sore in a few places from the biopsy too. Pain medication and ice chips helped keep my pain down to 3 or 4 on a scale of 10 in those places. After a while, I was released.
The PEG tube part of the equation was really not that bad. I had to learn to flush the tube, and get used to having a piece of plastic hanging out of me. The pain was gone within a day or two. It was the sore throat and not being able to eat for a few days that was a bigger issue. I drank fluids and had jello, yogurt and pudding for the first day or so. Soon after I started eating buttery rice and canned peaches and pears. It took about a week before I could stop taking pain medication, but every day I was eating more and more. Pizza, cheesesteak, and so forth. By day 8 or 9, I was a little sore but back to my old eating habits and I could talk again.
I got back to Dr. Weinstein who confirmed that I had nasopharyngeal cancer. A very small tumor and one of the non-keratinizing variety that really responds well to radiation. He stated that my chances of recovery were good and that my treatment would probably consist of radiation and chemo alone. Probably no need for surgery. He said he'd see me in January as my treatments wrapped up.
I went back to radiation and had a clear mask made for my radiation treatments. They made markings so they could begin designing my radiation treatments. Dr. Bar Ad was very clear about what we knew, and she said she was working to cure me. She was very clear about these treatments and that she expected me to get well.
My chemo doctor experience was no fun at all. The guy is Dr. Jared Weiss and there were administrative problems at Penn that meant he was 90-minutes late in seeing me. He works directly under Dr. Eric Sherman, another big hitter. They have a very straightforward protocol for chemo on nasopharynx cancer. Every 3 weeks, I'll receive an injection of medicines including the primary cancer-fighting drug Cisplatin beginning with the first morning I go for radiation. This is for three sessions (Week 1, 4, 7). After my radiation concludes, there will be another series of three sessions with Cisplatin and 5FU. The good news here is that he told me that I should not lose my hair and that pharmaceutical advances and my age/health could make my side effects a lot milder than many patients. There were some possible scary side effects, but none sounded worse than the alternative (death) and most were real low percentages.
So, as it stands now. I'm all set to begin chemotherapy at 7.30am on September 25. Later that day at 2.30pm I have radiation treatment scheduled. The first of 35 (or so) daily sessions of IMRT radition to my neck and nasopharynx.
This is a very long post. Most won't be anywhere near this long, but I was playing a lot of catch up. If you're a newly diagnosed cancer patient, my advice to you is to feel what you need to feel. Ride the rollercoaster, but surround yourself with friends, loved ones, and appreciate life. It's a frightening time, and it's important to breathe in the life around. Laugh, love and live!
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