Our Fight to Get Dave Better

Blog Retired

2008-05-23T10:43:00.003-04:00

"Parting is such sweet sorrow."

- Shakepeare, Romeo & Juliet

With more than a little hope, I am optimistically closing out this blog. It's purpose was to document my cancer fight, to provide honesty and information to those who have to fight this disease in the future . . . and to keep my support network in the loop on my progress.

In closing this blog, I am taking the leap of faith that cancer is behind me. It's not a certainty, but by closing this blog, I am making a statement that I believe I'm cured and ready to get back to living.

There have been a number of other cancer patients who contacted me and found this blog helpful. This brings a tear to my eye, well that and thinking about those who will find this blog in the future. To those, you are not alone and you can win your fight! God loves you, regardless of how you feel about Him. Embrace life, even if it's upside down for a while. I know what you're going through and what you will go through, and my heart goes out to you. If you stay positive and hopeful, you always have a chance. Surround yourself with loved ones and remember your job is "to just get through it". If you have questions or need to talk, please contact me.

To those new folks I've come to know, please stay in touch. I am grateful for your posts, your interest, and your positive support.

To reach me via email, my handle is savagecole57. I'm at Yahoo.com. So my handle@yahoo.com.

Spring Has Sprung (a leak)

2008-05-19T10:57:00.004-04:00

"With the rich and mighty, always a little patience."
- Spanish proverb

The quote above has almost nothing to do with me. I'm certainly not rich and mighty would be a stretch. The patience bit, ok. But the quote is a line from the play that I just directed The Philadelphia Story.

Throughout rehearsal, there were many times I could not speak. Beeds and then Josh spoke for me. They read my directorial notes to the cast from Meaks' laptop that I borrowed. The cast was patient while I coughed and went mute in the middle of feedback. When I needed to leave rehearsal because I was exhausted, they understood and worked on without me.

The show was pretty good at the end of the day, and definitely a helpful and rehabilative step in my recovery.

Work has gone well, although I've moved temporarily to a part-time schedule. My management and Human Resources team have been very supportive and understanding. They are giving me just the right amount of work to keep me engaged and bring me up to speed without exhausting and burning me out. It's so good to get into the office and feel productive again, and the human contact with friendly faces is gold.

My car is on the road and I've put a few hundred miles on it already. Sure it turns head and puts smiles (and looks of fear) on other people's faces, but that is nothing compared to what it does for me. The car's deep rumbling engine and powerful responsiveness is really bringing me back from cancer mentality. I can't help but forget the troubles of my cancer fight when I'm behind the wheel of that mystical machine and the terrifying pleasure that driving it brings works wonders for me.

My 38th birthday was Friday, and Kristina organized a nice party for me. Friends, members of my cast, and my family got together for beer and appetizers. I had my first few sips of beer in about 8 months. Didn't taste great, but I've always been more of a whiskey man anyway. That . . . I'm afraid . . . is something I will have to look forward to.

All of my happiness and optimism is tempered by concern for others still very much in their fights. I know I'm not out of the woods yet, but others I know are having rough times. The beautiful Lorelei in Canada has learned that her cancer has spread to multiple lymph nodes in her neck and under her arms. Another hero I know recently passed in his struggle, and my mom's friend's son is moving to a cell-replacement trial for his multiple-met cancer. I smile and live for these folks, and pray and think good thoughts for them. I know from my fight how rough things can get, and how important it is to take what pleasure you can from life despite pain and fear. That's not just true of cancer patients, you know.

Spring Has Sprung

2008-05-19T10:57:00.001-04:00

"With the rich and mighty, always a little patience."
- Spanish Proverb

Return to Work

2008-04-21T14:48:00.002-04:00

In my job at Prudential, I've heard or used the phrase "return to work" hundreds or thousands of times. I have a whole different perspective on those three simple words right now.

For quite some time I've been looking forward to getting back to the office. I love my home, but spending any more time there during the day would drive me crazy and I wanted to feel productive and dynamic again. Work gives me that.

When I returned to the office, I found big changes that have occurred. Familiar faces have left the company or our division, including our President Ed Baird. Changes everywhere have taken place including big changes within my own division. Plus my office was moved. So right now, in my second day, I'm reacclimating myself.

My voice has held out better than I thought, but I do have moments where I can't speak . . . which is awkward and difficult. My hearing has not been a problem at all yet, but with my first conference call I'll know better where we are there.

The main thing I'm working on now is seeing whether or not my body can take full-time hours or needs to come back on a part-time basis for the first month or so. Being me, instead of starting slow, I'm trying to do full-time hours this week. If I can't do it, then I figured I would adjust then. I just didn't want to come back part-time without trying to go full-time first.

Oh, one none work-related thing of note popped up. I was on the American Cancer Society's Cancer Surivor forums a couple days ago. I saw something that took a lot of pressure off me. It's very common for head/neck survivors not to be able to eat for even 9 months to a year following treatment. Here I've been beating myself up because it's a little over 2 months and I'm not eating yet. So, what I'm going through is very normal and I don't need to feel like I'm not doing enough. When I can get this PEG tube out of my stomach, and get to eating real food again . . . that will be incredible. I'm smiling just thinking about what the future holds for me.

Finally, I wanted to let people know that I've gained a little wait back and am at 180 (still about 30-40 pounds below pre-treatment wait). I look about the same size I did when I got out of college. And my hair is really coming in now. It's getting thicker and longer already. Soon I'll look like a hippy.

No Longer Cancer Patient . . . Cancer Survivor

2008-04-17T17:02:00.002-04:00

First of all, I apologize for not posting for quite some time. There has been a lot going on and as superstitious as it sounds, I did not want to tempt fate by posting anything until I met with my doctors, etc.

Tomorrow I am scheduled to return to work, and I'm excited to be going back. My excitement is tempered by my concerns about my voice and hearing. I still have trouble speaking, but I am speaking again. My hearing is also affected, to the point where the doctor says I have the hearing of a 70-year old. In time, some hearing loss may be recovered. At the one year point, if no improvement is achieved . . . it's hearing aid time. I can live with that. I'm just worried about the near future and being able to hear people during conference calls, etc. Listening and talking are crucial parts of my job, and I always want to be the best.

The results of a recent PET scan for cancer found some nodules in my lungs that could be cancer. The lungs are a common spot for nasopharynx cancer to metasisize (spread) to after treatment, so I was concerned. Dr. Weinstein ordered a CT followup and meeting with top doc pulmonary specialist Sturman at Penn.

My CT was done and last week I meet with Dr. Weinstein again. He scoped my nose/throat, which is a slightly uncomfortable process . . . but I have worried about possible recurrence of my nasopharynx tumor and this was a way to take a look. He said everything looked great up there. He also reviewed the CT and PET and thought there was probably nothing to worry about, but to still see Dr. Sturman. This was a tremendous relief, but not the greatest feeling I got out of that visit. You see, I saw Dr. Weinstein key the word "remission" into the computer.

I was till nervous about the possible lung spread, especially with the heavy cough I had developed. So, this morning when I met with Dr. Sherman (chemo doc) and Dr. Sturman (pulmonary), I was keeping my fingers crossed. The other key piece of information that I wanted from Dr. Sherman was the result of my EBV test. You may recall me mentioning that post-treatment EBV levels are more predictive of cancer recurrence than PET or CT or MRI. Elevated levels after treatment, even with apparently clean PET/CT/MRI tend to lead to a recurrence and/or spread of the cancer. Whereas, normal levels do not.

Dr. Sherman checked me out and it was good to see him again. He said my EBV levels were so low they were undetectable . . . AMAZING news. It reminded me of the old show Cheers when Norm greets the beer tap repair guy with the phrase: "If only we lived in a culture where men could kiss men without shame." Awesome news. He followed it up by saying that my PET/CT results in the chest were nothing to worry about. So, I left Dr. Sherman's office feeling very good.

So, then I headed over to Dr. Sturman to see what he thought about the lung tests, etc. Dr. Sturman was extremely professional. A great doctor. He talked about my situation asking many questions, and listening to my lungs very carefully. He said everything sounded normal and took me to view my CT scans. He noted that there were three suspicious spots on my lungs. The first he said showed signs of inflammatory scarring, and almost definitely was not cancer. The second he said was a cluster at the bottom of my lungs that showed every sign of being drainage and not cancer. The third he said he really didn't think was cancer but was less easy to completely dismiss. He said it was very unlikely to be cancer, but the only way to know for sure would be surgical resection which he thought was unwarranted. Instead, he said we'd monitor it next time we saw each other . . . in 6 months. This tack seemed more of a thoroughness move than any concern of actual cancer on his part.

I don't want to pull a George Bush "Mission Accomplished" here, but everything points to me having beaten cancer. God, Kristina, my mom, and everyone who cared and prayed for me worked wonders! Now it's time to really live again.

Big Day

2008-03-25T17:18:00.003-04:00

Hello, everyone!

My SLOW recovery tends to progress SLOWLY, but I am getting better. I have learned that this is the toughest time in the process for many survivors/patients mentally . . . because you've done all you can with the treatments and you're waiting for the all clear and for your body to shake off 6 months or so of physical abuse.

I've noticed my loved ones around me have been more impatient lately for me to get better. It's so easy for me to forget how this is not just my battle and struggle. Everyone else has so much at stake, and it's natural for them to want to see results too. It's also natural for them to go to the source of those results (me) and be selfish or impatient for me to get better. Of course, nobody wants me better, eating and living than me. Unlike everyone around me, I've been trapped here the whole time. I don't get breaks to visit friends or family, to have a nice meal to get away from it, etc. For me, this IS life. The point is, I understand everyone's love and wanting me to get better . . . but it's hard enough for me to be understanding, patient and calm with my body when I don't have outside negative pressure.

Everyday, I want to get up and be able to grab a bagel and cream cheese, a mocha latte and head to work where I see friends and feel productive. I want to meet up after work for drinks or dinner with friends and then head out to meet Kristina, where we go to a movie, etc. A lot of nights I have dreams about eating food, being at work, and getting my old life back. Then I wake up. It's hard as hell to fight the disappointment and depression, and that gets compounded when the people I love are obviously hurt/inconvenienced by my condition.

This is a part of the strength that is coming with the process though. I've got to be strong enough to fight through all of this, and not get down.

Tomorrow morning, I have my PET/CT scan at 11am ET. It's the test where they see if there's any cancer cells in my body. There are often false positives, meaning the test says you have cancer when you don't. There are almost no false negatives, so if the test comes back negative it's good news. If it comes back positve, I'm not going to fall apart.

In the mean time, I'm battling through the last stages of a little bout with the flu. Everyone around me has had it, just about. It's a little funny to me. Everyone talks about how awful it is, and how they "pray for death", etc. I suffered through it for a few days and thought, this is a piece of cake. Nausea, fatigue, congestion, a little vomiting? Welcome to my world. hehehe. I'm a survivor now, and the flu doesn't phase me.

2008-03-17T09:51:00.003-04:00

"Scars have the strange power to remind us that our past is real."

- Cormac McCarthy, All the Pretty Horses

In just two short weeks, I am due to be back at work. Given the fact that I'm barely speaking right now and not eating, I'm a little worried about being ready to go back to work. Mentally and emotionally, I've been ready (even eager) to get back to my work. Physically, I'm in great shape to sit at a desk and computer all day. It's what I've been doing, in fact training for, these last few weeks. However, the power of speech without vomiting is pretty critical to what I do. So, I'm hoping to really get some serious recovery going on that front in the next two weeks.

Two weeks. It seems so little time in the grand scheme of 6 months out of the office . . . but I know how this recover business is. Any morning I could wake up and feel well enough to try soup or food. Although right now my throat is full and my nose very congested, this could change. I am hopeful that in the next two weeks I'll be ready to go. It does worry me a bit, but I will do my best. Prayer and determination should get me ready to return.

One thing that troubles me is that my nose is perpetually congested . . . which is a symptom of nasopharynx cancer. Did the radiation nuke the primary site or is there residual that remains? Is it on the rebound and determined to finish what it started? In a few weeks, I meet with Dr. Weinstein and Dr. Sherman again to get answers to this question.

Like Dr. Bar Ad (my radiologist), Dr. Sherman will be leaving Penn. This summer he'll be going to Sloan-Kettering in New York, a world-renowned cancer hospital. It's good knowing that my doctor is so well regarded that he can secure a position at one of the best cancer hospitals in the country.

At this point, getting ready for a return to work, I look back at how far I've come and what I've been through. I still have a ways to go before life returns to anything resembling normal, but the most gruesome parts of the battle are hopefully behind me. I think of the long weeks of radiation, the 6 different chemo treatments, scores of trips to the hospital for fluid and tests, and those lovely emergency room visits. Looking back at it all, it's very easy to forget what I've been through . . . even though it was such a struggle while I was going through it. It's truly amazing what the human psyche can do in forgetting past pain.

What I cannot forget is the love and strength I had around me through this battle. I remember so clearly how surreal it was to hear that I had advanced cancer, and thinking I was going to die. The calls that I made to my mom, my wife, my friend Brian, and to my boss Alada remain so vivid to me. The drives to University City with dad and with mom for treatment are indelible. Mom's smiles and Kristina's constant and tender support will always be with me. The kind words from those on this blog, Nancy's cards, Shelly's visits, emails, texts, and the caring look in friends' eyes, these are all treasures that I've collected during this difficult time. With the love of so many, I've gotten through it.

Recovery Doldrums

2008-03-06T07:03:00.002-05:00

It's been such a great while since I posted. Why? Because I've been sort of stuck in the recovery doldrums, standing still it seems. I feel about the same as I did a week ago, and still get sick every so often . . . but feel better than last time. I was sort of hoping I'd be more recovered at this point, but it hasn't been a month yet.

My doctor's visit with Sherman went fine. The big news there is that they took a blood test to check the EBV levels in my DNA. It's a test that gets sent to Hong Kong for analysis. Remember nasopharyngeal cancer is epidemic in South China. so treatment and research is quite advanced there. This DNA test will actually be more predictive than PET/CT or MRI in determining whether or not they truly wiped out my cancer and what the chances of it's return are. So, I'm eager for my April visit to see my results . . . and praying they are good news.

My mom went home last week, leaving me in the care of dear old dad. He's gonig a good job of subbing for mom . . . but there's really no substitute for my mom.

Battling Back

2008-02-25T14:53:00.003-05:00

It's been a while since I lead off with a quote, but here's a good one.

"It does appear that his disease has completely resolved with the concurrent radiation and cisplatin followed by adjuvant 5-fluorouracil and cisplatin."

- Dr. Lorraine Dougherty, notes from medical chart for David Cole

Mind you, i still have an all important PET/CT scan in April and there's still a risk of recurrence for the first 2-5 years, but it's nice to see this.

I'm feeling surprisingly well here at 2 weeks post-chemo #6 and it's been a pleasant surprise. Nothing like the last two rounds. Thank God, and all of you for your thoughts and prayers. I still have wicked dry mouth and terrible mucous in my throat that keeps me from being able to talk much at all, and food is still all liquid through tube. Still, at this point, I'm not barfing constantly or being rushed to the ER. I consider that a very good thing.

This is a big week for me.

I had bloodwork done today at Doylestown, my last visit there until they take out my PICC line, which should be soon. My blood cell counts were low, so I'm really prone to infection right now. This means no going anywhere or being around people. Knowing how social I am, you'd realize how much of a hell that is for me. But I keep in contact with email and stuff. Hopefully in a week or two my counts will be healthy enough to reintroduce me to society. By then maybe I'll be able to talk again easier.

Tomorrow I go back down to Penn to meet with my medical oncologist Dr. Sherman. I haven't seen him since November/December. I'm interested to hear what he's got to say about my chemo results and plan of action for the future. I know he'll want me to put on more weight. I'm at 170 now. Ideally, I'd like to get back to 190. What's funny is that after I can eat again and life returns to normal, it'll be hard for me to keep from getting fat.

Wednesday I have a dentist appointment. I'm worried the dry mouth is having an effect on my teeth. Typically patients get lots of cavities and I fear this could happen. I've tried to do a good job of brushing, etc. but dry mouth is just hell on teeth.

So, like I said, busy week.

Getting a little bumpy

2008-02-19T11:00:00.003-05:00

OK, I knew it was coming and yesterday afternoon things got a little bumpy on me. After not really getting sick all week, yesterday I was sick 4 times and felt like hell from afternoon to night.

It's been nice having the time before this, and I'm ready for the bumpy ride ahead. May it be short.

Thanks, everyone. For the thoughts and prayers. I can't tell you how much I need them.

So Far, So Good

2008-02-14T10:55:00.001-05:00

I've been lucky so far. Unlike my last treatment, I havent been vomitting yet. I'm starting to feel the side effects, but it's a lot smoother than last time. With that said, I know it's this weekend through the next one or two that's toughest on me.

For now, I'm counting my blessings though.

Good Omen

2008-02-07T11:33:00.001-05:00

Something touching happened to me this morning that really gives me faith in my fight.

From time to time, I receive a get well card with an encouraging message in the mail. Usually these cards are from my aunts, uncles, other family, or friends that don't see me regularly. And of course, I've received cards from caring co-workers at Prudential.

I really appreciate these cards, because people take time to let me know I'm in their thoughts and it helps me feel less alone. A lot like this blog and comments section. For a lot of people, they want to help me and just don't know how, and I think they send a card almost because they don't know what else to do. It's a good move, at least I appreciate it.

One friend of mine, who was almost like a 2nd mom to me growing up has sent me like 20 cards. She's a cancer survivor herself and is such a positive bright light. She posts comments here a lot, too. I really love and appreciate it.

Well, today the card came from a very unusual sender. The envelope's return address read Westview Missionary Baptist Church. It was postmarked Beckley, WV.

Beckley is the county seat of Raleigh County, West Virginia. A place where I spent a lot of time as a kid. You see, that's where my grandparents lived when I was growing up. Not in "urban" Beckley, but 40-minutez outside in the back country hills. Very rural, and poor but proud. It was also incredibly beautiful. The song Almost Heaven made sense. There was no town to speak of where they lived. Their road was gravel and wound through a hill and hollow. At the end of the gravel road, where it met a paved state highway was the small, wooden church where everyone went on Wednesday nights and Sundays, if not more. This was Westview Missionary Baptist Church.

Every summer I went to my grandparents place. They had a good amount of land, where a boy could shoot, hike, tend chickens and pigs, and meet kids whose lives where very different from his. My grandfather was a man's man bigger than John Wayne to me, and my grandmother was a very religious and made sure that I got to church while we were visiting.

So, I worshipped more than once in Westview Missionary Baptist Church as a kid. It was not the quiet, calm of the Presbyterian Church that I was raised in. The preacher here was fire-and-brimstone and the services very interactive, and filled with lively spirit. There was no hiding in that small church. If you didn't sing, you'd get called out on it. Questions were asked from the pulpit and you better be ready to answer.

The last time I was there was probably 1987, so I was very surprised to get a card from the church. My grandmother hasn't lived out that way for almost 20 years. Nevertheless, when I opened that card, I found it was signed by dozens of members of the congregation one Sunday morning. I'm in their thoughts, they'd tell me, and in their PRAYERS. Now that's the sort of Jesus power you have to love.

Cancer doesn't stand a chance when I've got people like that praying for me. And I'm very moved to be remembered and loved this way.

What a great day today was!

2008-02-04T17:15:00.000-05:00

I had a very nice day today, which is great. I really need the boost before next week's adventure begins. What made it so nice? I'm not really sure, but it helped that I didn't get sick at all today.

My mom has been around and we've chatted here and there and my voice is definitely getting stronger. I puttered away on-line all day today trading emails with all sorts of friends all day, and I think at the end of the day all that social contact is really what made today so great.

Much better than a day of lying around on the couch watching sitcom reruns and letting the day drag by. My mom love seeing up and about instead of just vegetating at the couch.

To be honest, part of my computer work today is to start exercising my body for full days at work again. I need to get ready for office work again. While much of my day is spent or in meetings, a big part of my job is slugging away at the PC reviewing and preparing documents. Sometimes, it's long days of getting materials designed for presentations/meetings and updating project management tracking tools. I know it sounds dull to some, but I actually miss it. Today, I sort of felt like I was working from home. The productivity felt good!

Another nice thing that happened today is that the doctor who has been with me from the start of this journey, but had to move on now that the radiation phase is complete, gave me a call out of the blue just to hear how I was doing. What kind of doctor these days calls former patients to check on them? None of my current docs call me. Dr. Bar Ad is an amazingly caring person and my strong instincts about her were right on. She's tops. She gave me her number and told me to call her with updates and any questions at all. How lucky I am that a world-class doctor took such a personal interest in my case. She wants me cured and is proud of how I've come along.

Tonight, I'm looking forward to trying to have a little New England clam chowder for dinner. While I eat it, I'll be thinking of all the happy Giants fans who saw their team heroically beat Boston last night.

I want to live, baby!

2008-02-03T12:45:00.001-05:00

OK, I've reached a tough decision. I'm going forward with the sixth and (pray God) final chemo treatment.

I think having the recent recurrence fear was good for me. It reminded me how much I have to do everything in my body and spirit's power to defeat the Big C. God is helping. My doctors are helping. Man, is my support team helping. Thanks mom, dad, mike, Kristina, Shelly, and friends, plus all you guys. So, I need to tough out this last treatment to give myself the very best chance to live a longer and happier life enjoying all my blessings.

True, these last two chemo treatments have been really scarey and rough on my body. I really haven't had to dig so deep before, but I need to do this so I can get on with my best chance for long-term survival.

The troublesome parts of this are many. First, I am worn out and really just want to quickly get whole as soon as possible. This delays that a month. But what's a month, when you're talking life, right?!

The second troublesome item is that I am eager to get back to work and have a deadline of March 12, which I could make without doing chemo 6. Doing chemo 6, it's unlikely I'll be up for return then. I risk losing my job, as I'll have been out for 6 months. I love my work and the people that I deal with, so aside from the financial and medical grief, I'd rather not deal with that. I can apply for a leave of absence for the period after March 12 until I return. Hopefully, it's approved. But I really wanted to be back in March.

Third, I have a theater obligation which begins in the first week of March, which I am going to be out for. I'll need to rely on friends to cover for me for the weeks until I'm ready to try to direct. It'll be tough and I'm really sorry about this. So many of my friends and my entertainment are wrapped around our theater company. I've missed it very much.

Ultimately, these are costs that need to be paid. We are talking about giving me the best chance to live. Temporary suffering for a few weeks, financial tradeoffs, and giving up hobbies is the cost I have to pay. If I go down to cancer, I never want to know that I didn't do all I could to beat it. I want my family and loved ones to know that I did all I could to be with them as long as I could.

Great News: An Understatement

2008-02-01T10:38:00.000-05:00

The swollen lymph nodes are most likely not cancer. They seem like a simple case of parotitis, which is an inflammation of my salivary gland due to the radiation and dry mouth. What a relief!!!!

The problem is not uncommon, but the doc at Doylestown did not know what it was. Dr. Dougherty called Dr. Sherman who suggested it, and then Weinstein who said that I needed to see a ENT specialist immediately.

So after a 9-hour hospital day, I met with Dr. Mass, who is a Doylestown ENT. He knows Weinstein very well, and Weinstein had mentioned he knew the ENT staff at Doylestown and was very impressed by them.

After a short examination and some questions, he said it looks like a simple case of parotitis, an inflamed salivary gland. I was so relieved and told him worried my cancer had come back and he gave me a knowing "I don't think so", which made me feel good. I need more fluids, and to suck on candy/chewing gum to stimulate more flow.

This was another rollercoaster ride where I really feared the worst, and things worked out for the best.

Now my big question is whether or not to do the #6 chemo and finish my treatments, or pull the plug. Hmmmm.

Another Health Scare

2008-01-31T08:18:00.000-05:00

OK, just as things are getting better something scarey happens. In the cornern of my neck/ear/jaw, I get this large painful swelling. I figure its an ear infection, because my counts are so low and my ears have been acting up.

So we go to my PCP who checks me out. She's not sure what it is. It's not a regular middle ear infection she says, more like a swimmer's ear, but I can bend the outside flap. She's not sure if maybe we have infllamed the lymph node and salivary gland that are there.

Inflamed? How? Are you just talking infection? Could this be another bought with lymph nodes and cancer. The good news is that the area is hot an painful to the touch which encourages the theory of infection. The bad news is that the word lymph node was used and my doctor said it's not looking like a regular ear infection.

We're doing antibiotoics for a week=10 days. I have an appointment today with my cancer doc Dougherty and Feb 6 with the guru Dr. Weinstein. It's a bit of a scare, but most likely just an infection. It's painful as hell too.

Rolling Along

2008-01-25T11:23:00.000-05:00

I continue to feel better and better. Rarely any sickness, maybe once every couple days and it's due to my cold-like symptoms more than any chemo nausea.

I'm hydrating ok and "feeding" well enough, although I lost another 5 pounds this week. That's not good. i'm down to 170, which is about as low as I want to go. Really, I way in at 190-195 pounds when I'm taking care of myself, so that's where I need to get to. I started at 217, yup 47 pounds ago. That weight was my highest ever and the product of indulging in snacks while I could before radiation, etc. It's getting time to get my symptoms out of the way, so I can eat and ensure my way back to 195. Then I can get my stomach tube removed!!!!!! That will be a graduation.

I'm not as tired as I have been, but my white blood counts are real low right now, making infection very easy. So, I'm not shaking hands, kissing, or doing any real public time. I'm a shut in, but that's basically what's been going on for 6 months now. It's been tough, but I can taste a return to normal life.

My dad's been up this week, and it's been nice seeing him. He's heading home soon, but I appreciate his visits, as much to offer my mom some company as the comfort he gives me. Kristina has been her usual angel self. She has tirelessly been there for me throughout this entire ordeal, and it's incredible how she's helped me. Shelly's visits have also been very helpful. All my other friends want to come and are waiting for my ok. I figure as soon as my white counts are back up, I'll be ready for visitors.

Turning the Corner

2008-01-20T10:27:00.000-05:00

Well, I feel like I finally turned the corner on my recent bout of chemo hell. I'm not 100% by a long shot, but I feel better, am no longer constantly getting sick, and am getting much more food and water than earlier.

It reminds me of lines from the old Speed Racer theme song:

And when the odds are against him
And there's dangerous work to do
You bet your life Speed Racer will see it through

Like so many guys my age, I idolized Speed Racer way too much. Although, truth be told, I was always more of a Racer X fan. OK, enough nerdery for now.

I wanted to thank everyone for their well-wishing and beams/prayers/thoughts. It made the difference in a rough patch. Hopefully from here it's all up hill.

Soon maybe I'll eat again, be able to speak normally, and quit having to spit every 2 seconds into a bucket, but for now life is much better than it has been, and I'm grateful. Pretty much bald, but grateful.

Oh, and I was amused to see this trailer for a live action version of Speed Racer hitting screens.
http://www.youtube.com/watch?v=tO2jcwgIi8o&feature=related

Still Battling

2008-01-16T11:23:00.000-05:00

I'm still battling this tough spell. I can keep down a few cans of Ensure a day now, and am vomiting a lot less frequently and voluminously. Never thought I'd use that v word in a sentence.

My mouth and throat feel like hell, and I'm tired as hell right now. This battle is no fun, but I look at the incremental progress of being able to keep meds down without vomiting them instantly and taking some Ensure vs. none.

I've all but decided on no #6 chemo, and that means if I can tough it through this, I'm reallly through the treatment. In some way, that should make it easier to endure.

I love you all for your support. Keep praying. I'm needing those beams of good thought right now.

Another ER Visit

2008-01-14T09:07:00.000-05:00

Last night I made another trip to the ER to deal with chemo illness. I'd been unable to keep anything down and was puking about 10-12 times repeatedly every time I tubed my Ensure or water. the biggest problem is that this creates a viciious cycle of more puking and malnutrition/dehydration. So, you can't let it go.

All the precautions medically, the new drugs and the doctors strategies have not done what I'd hoped and made chemo more bareable for me. Everyone seems like I am having a particularly rough reaction to the chemo and their usual magic wands like Zofran and others for anti-nausea seem to hold no sway.

I am seriously considering letting Chemo #5 be my last chemo and then using the extra time to recover and get ready for work and life. At this point, I've already exceeded the treatments of other nasopharynx patients that I know and my results are good. Honestly, my body just doesn't seem up for another round and I think it's time to let it heal and regenerate without further abuse. I will talk with my docs, but I am leaning heavily this way as of now.

Chemo #5

2008-01-12T10:50:00.000-05:00

OK, I'm moving through chemo #5. I've been sick, as was expected, and it's a drag being in this time. However, I know it'll pass and I'll have some peace before my final chemo.

What I haven't posted yet is some tremendous news.

My very respected surgeon, Dr. Greg Weinstein, met with me on Tuesday and was astonished at the progress and results of my treatment. He kept saying you're doing extremely well, and you're going to be ok. He said most people don't see the great results that I have.

Woo-hoo!

Beyond this, he wants to wait three months from now before making a final decision on lymph node dissection in my neck. He said a PET/CT scan will be taken and if it shows cancer, then we'll cut. Otherwise, no need.

It was a great visit, and even though I felt sick because of the chemo, I was elated.

David Cole, Pharmaceutical Sponge

2008-01-07T17:39:00.000-05:00

"I think one probably absorbs things like a sponge and things emerge without your always being aware of it."

- Jeremy Northam, British actor (and one of my favorites)

I had chemo today. For those who have never been, it's rather boring really. You get to the place and they draw your blood and test it to make sure you are healthy enough for the treatment. Then they hook you up to a large bag of saline water that drains intravenously into your body over the course of an hour. Then they hook up other bags, smaller usually, with anti-nausea meds, with magnesium (which Cisplatin depletes), and then they give you the money drug. Cisplatin. It's the big anti-cancer standard, and it's platinum-based. Platinum and life-saving. I can only imagine what the dose they put into me cost. Probably even more than the rising price of gas (petrol, to our English friend). Then another big bag of saline and I'm ready for my portable pump filled with 5FU that runs for 5 days pushing this drug into my system.

It generally takes about 5 hours to do this all, and my job is to be a big sponge and suck up the meds. There's no real nausea or pain involved during the taking of the treatment. It's usually a few days after before the anti-nausea drugs are done and the Cisplatin really begins to do its worst on your body. I find the first two weekends after treatment and the week in-between to be the darkest days of the chemo. Here' s when you barf incessantly, feel awful, and just wish it was over. I haven't looked, but you'd probably find few posts from me during these times during my last 4 chemo sessions. The good news is this is #5, and when the 10 days of hell comes it will be my next to last (hopefully ever) chemo treatment.

In the mean time , I had a great day at chemo, and again it was food related. The kind volunteer lady brought my mom a coffee and some Rold's Gold pretzels. My mom ate a few and the bag was lying there so I figured "Why not?" Well, they are hard, dry, and sharp to cut your mouth . . . could have been a wise response. I did the unwise thing and ate the pretzel. It melted in my mouth, and I chewed it very well. It went down without trouble!!!! So, I had a handful of the bastards and they were delicious. I started thinking. Are Doritos possible? Is God showing me how much he truly loves me?

My mom decides to go get some lunch at the nice little sandwich shop in the hospital. She comes back with a turkey and cheese on white with mayo and lettuce for me. And a pack of potato chips. Ruffles, not Doritos, but hey. I try the sandwich, bread and all. It shoots down without trouble!! Life is grand. Like I said when I ate that sandwhich, I felt like I was coming home. I ate most of the potato chips (again for the Englander, crisps). They were awesome and no trouble to eat. I also drank a peach smoothie and drank a couple cups of apple juice during my treatment. Two weeks ago, I never would have believed I would be eating this well this soon.

So, I decided to be bold and try a burger and fries for dinner. Wendy's has pretty greasy burgers, which is good for me and my saliva-challenged mouth. I can order them without acidic trouble makers like onions, catsup, and mustard. I wanted to try fries after the chips, too. (My English friends must be furious now. Chips=crisps, fries=chips). In any case, I gave it a go and the fries were so hard to eat. They were too dry. I put catsup on them, and the acidity hurt my mouth. The burger was a little better, but after eating maybe half, I had to give up. A little dry, and the little catsup I used was burning me too much. Oh well. I'll try it again in the future and some day re-add that to the menu.

In the mean time, I had a good day. My stomach is a little upset now, and I'm starting to feel the chemo a little (heart burn and fatigue). I'm still trying to go to a viewing tonight for a good friend's dad. Afterwards, I will really sleep like a champ, I'm sure.

2008-01-06T12:51:00.000-05:00

"How little do we know that which we are!

How less what we may be!"

- Lord Bryon, Don Juan

So, here's the deal with the picture. I took it to show my swollen lymph nodes in my neck, back in August. Right now, there's nothing there!

The past few days have been great. Energy has been relatively high and I started pre-production work on a play that I can hopefully still direct for May 2008 with our community theater. The company signed me to direct it last March or so, before cancer was known. They may be pinch-hitting for me at some of the early rehearsals, read-through, etc., depending upon how I'm doing.

Honestly, I love having a little something that can keep my mind and typing fingers busy. I'm using this as therapy for getting back to my job at Prudential, too. Right now, I can work for about 30-45 minutes at a clip and then get exhausted. Hopefully with more practice, I can get myself up to a full day. I really miss Prudential.

I've been eating more and more. I now try to eat by mouth at every meal, even though 90% of my food is still through my stomach tube. Today, I have eaten (by mouth) 1100 calories through lunch time, and taken none by feeding tube. It's exciting.

I am trying to get well, and getting myself back in order. It's hard and takes work, but I want to get well and get my life back.

Latest Doc Visit

2008-01-04T08:58:00.001-05:00

I had my latest visit with Dr. Dougherty at Doylestown Hospital. She is a caring doctor and I like her. My mother came with me as usual. I have to say my mom is a huge asset in my recovery. Not only is she selflessly here to help me with feedings, medicine, dressing changes, and the like, she is there to take me to the doc. When we're there, her medical background and ability to gain the respect of other nurses and docs helps immensely. She's a great advocate for me and I treasure the help she's been providing.

Yesterday, Dr. Dougherty said I look good to go for next Monday's follow-up chemo #2. My counts are ok, liver functioning ok, no appreciable increase in hearing loss, and blood counts seem ok to proceed. She also did a feel of my throat to check my lymph nodes and says she can't feel a lump. The only possible thing she detected is near my obvious scar tissue from biopsy #1 done in Warminster. At most, she said anything there is smaller than a pea.

This is very likely to be residual necrotic tissue, if its not scar tissue from the first biopsy, so I expect Dr. Weinstein will forego a recommedation for surgery. I also expect he'll want to do some testing before making a recommendation, but we'll see.

In any case, it's good the lump is either gone or virtually indetectable now.

The next round of chemo is set for Monday and I hope it goes smoother than the last. We have some good plans for proactive hydration and anti-nausea meds, so I think we'll fair ok. It's just tough business and time to put my game face on.

This is a fight for life, and I never lose sight of that, or all I have to win for. Sadly, a few family family members of a good friend have recently been taken by cancer, and that reminds me how there's no guarantee this treatment will succeed. I've never understood so well how much I love life.

"The future is unwritten."
- Joe Strummer, Punk Rock Warlord

Can't Keep a Good Shaolin Monk Down

2008-01-02T10:26:00.001-05:00

I'm battling back and getting and feeling better. One thing that helped was our traditional New Year's dinner. Every January 1, for as long as I can remember my family has done the same thing for dinner. You see, my father grew up in a predominantly Polish neighborhood and worked in a local meat place where they did kielbasa and everything. So, some customs must have rubbed off and blended with those of his German grandmother, because every New Year's we prepare a feast of kielbasa, sauer kraut, German roast pork and mashed potatoes. Inside the sauerkraut, we place a cleaned dime. Whoever finds this token when dishing out their portion is supposed to enjoy good luck and prosperity through the year. My mom skipped the dime this year, but I like to think I was a shoe-in to find it this year anyway.

I ate a few spoonfuls of heavily buttered mashed potatoes, two small slices of kielbasa, and a few bits of pork. Yes, solid food. Meat! It's just a matter of time, baby!

On another topic, my impending baldness. Seamus, in comments, mentioned an old plan friends and I had to get me a pimp hat. However, I am going a whole other direction. Instead of hiding my baldness with shame (and there's little more shameful clothing than a pimp hat), I'm going to display with proud Shaolin style!

Happy New Year

2008-01-01T12:27:00.000-05:00

Since my last post, I have not gotten sick and my energy and focus has been a little better. My hair loss has slowed, but it's still shedding.

I think I'm doing better, and that's good enough for me right now.

My New Year's resolutions are simple:

1. Be nicer to everyone I know, and those I don't.
2. Stay focused on getting better and what I can versus can't do!
3. Remember all the kindness and love I've been shown during my treatments, so when I'm better I will have really benefitted from this trial.

Well, I'm going to go fix some soup and maybe drink some diet ginger ale.

Best wishes for the New Year, everyone!

Backsliding

2007-12-30T14:57:00.000-05:00

For some reason, I thought my recovery would be a straight diagonal line up until I was better. Unfortunately, it's a little more jagged. I've had a rough few days, with a lot of barfing and the inability to hold down anything . . . which reinforces the problem. I think I'm climbing out of it.

Sadly, it looks like I am losing my hair. The first three rounds of Cisplatin, I kept my hair and assumed I would keep it through these. Not so, I'm shedding it pretty good. It'll grow back, but it's a bummer. I had thought that I was going to be spared that indignity, but . . .

My most pressing problem is that my red and white blood counts are quite low. This makes me very prone to infection, but also brings about a sort of anemic fatigue that's no fun.

So, to sum up. Bad times lately. Wah Wah Wah. Poor me.

I know things'll get better and that I just need to keep my head up. Thanks for letting me vent.

Doing It

2007-12-27T17:09:00.000-05:00

OK, I have had a good day today. After a couple of days of battling nausea, I've actually got some good sleep and am "eating" regularly. "Eating" being taking Ensure through my stomach tube.

I felt so good today that I decided to try more soup. So, chicken noodle it is. I had about a dozen spoons of broth and even tried to eat a noodle. I figured a noodle is slippery and should work. It took me several attempts and lots of water to get it down. It was kind of funny.

The good news is that my taste is starting to come back. I've tasted (only to spit out) a number of foods lately, stuffing, turkey (on Christmas), sugarplums, etc. I can taste more and more. Not perfectly, but some taste is there. I'll take it for now!

Year of the Cole

2007-12-22T18:43:00.000-05:00

This evening, I had a few slurps of wonton soup broth, which technically counts as my first eating since September. It's a long way from a Tuscan steak with Brunello or Shelly's mom's stuffing but it's a first step. If my mouth sores would tame down, I'd be more daring. Right now, I'm happy with drinking and broth slurping.

The other cool thing is my car is back from the painter's and my father-in-law/friend/carbuilding guru master has nearly reassembled everything. In no time, I'll be street legal and giving everyone a new reason to pray for me not to die.

Here's a little pic of the car back from the painters, still under reconstruction.

Back on the Sauce

2007-12-20T20:51:00.000-05:00

It's come to this. I'm drinking again. Can you blame me with all I've been through?

No, not alcohol . . . yet. I have actually taken several sips, maybe even gulps of water now and swallowed them without trouble.

This is huge in my recovery and who knows. Soon I'll be eating.

My health has generally stabilized to usual chemo status, so I'm not great but almost functional. I'm still not really talking quite yet, and I have awful mouth sores right now. But tonight's drinking session is perhaps the sweetest one I've ever had.

Thanks for all your notes, prayers, cards and thoughts, everyone. Prayer and drive combine to produce results, baby!

Blind Sided

2007-12-18T18:56:00.000-05:00

I just got out of the hospital this afternoon. I got checked in after a blood test during my 4th chemo cycle here.

Before this chemo, I thought, "Hell, I'm been through three rounds aleady and simultaneous with radiation. It should be a piece of cake."

Well, a piece of cake? A piece of bitter, nasty cake covered with angry bees maybe. It certainly has not been easy to deal with.

The first three days were ok, but the weekend was rough. I was sick beginning Friday night pretty much all through to Monday. Without being gorey, I'll say the volume I pushed out of me was at times shocking to me. It would be funny, except it burned badly at times.

You see, I've entered a common phase for head/neck cancer patients where we develop sores inside our throat and mouth. My lips are shredded raw and bloody, too. So, I'm quite pathetic. Pity me. Boo hoo.

Aside from this discomfort, the major problem is vomiting.

The vomiting was so bad that I ended up with nothing to vomit, except bile . . which is basically pure acid. Youch.

So, Monday my blood work came back and they decided to get me fluids and check me in for some care. The visit was not a great time and I would have been better off getting the same attention from my mom. Nevertheless, Kristina came and actually bamboozled the hospital into letting her stay the night watching over me and interrupting for my nurses. My speech is particularly bad right now.

It's been hard, but I'm hoping I'm ready to start recovery now.

Phase II Begins

2007-12-10T16:16:00.000-05:00

"If we do not find anything pleasant, at least we shall find something new."

- Voltaire, Candide

OK, so today I headed over to Doylestown to begin the first of three monthly chemo treatments of Cisplatin/5FU. I've done reasonably well with the Cisplatin, aside from the hearing loss. So, I am hoping I continue to tolerate it without too much trouble. The 5FU is less disastrous, according to everyone I've spoken with, then the Cisplatin. So, again, I am hopeful these treatments will not cause too much trouble or stall my recovery from radiation too badly.

It was a full day at the hospital, and I got the chance to use my new PICC line rather than getting IVs and blood test needles. It was pretty cool. The nurses warned of the risk of infection with PICC lines, particularly during the chemo cycle when my white blood counts drop sharply and I'm very susceptible to infection. We'll do our best to be sterile and careful, as well as prayerful, that we can avoid trouble. I really just need it for the next 60 days or so.

So far, so good with the chemo treatment. I usually don't feel much until the next day and things really kick in around day 4 or so.

The other news I have to report is on my MRI and visit with Dr. Bar Ad. First things first. Dr. Bar Ad is leaving Penn to head up a Radiation team with the Veterans Administration. This is noble work, and I appreciate her help. Considering my radiation phase of treatment is over, it's a good time for me to lose her.

She was pleased with my MRI results, noting 90%+ shrinkage in my neck mass. She believes the remaining 10% is necrotic tissue, which always occurs with large masses in the lymph nodes being zapped with radiation. There is always a chance of some viable cancer cells within that mass. She believes if they are not dead, the next 3 chemo treatments are likely to kill them. However, she also said the option for surgical removal exists. Especially considering the fact that I am lucky enough to have Dr. Greg Weinstein as my surgeon, we are seeking his opinion on surgery. At this point, I am not worried about short term discomfort the surgery may bring if it increases my odds for survival. That's my thinking. However, Dr. Weinstein could say it's not really necessary. I am eager to hear from him some time this week.

PICC Line Install

2007-12-06T16:34:00.000-05:00

“It is in men as in soils where sometimes there is a vein of gold which the owner knows not.”

- Johnathon Swift

This morning I travel to Doylestown Hospital for my PICC install. The lovely 20-minute ride is so much easier than making the trip down to Penn. But I have to say, it's more than convenience that impresses me about Doylestown Hospital. The staff and facility are very impressive and welcoming. It's easy to see why it has been named best Hospital in Bucks/Montgomery counties for 12 years running.

I arrived with mom and headed into the interventional radiology area where PICC insertions are done. There was just one guy, like 35 or so, working there and he seemed very professional. In many ways he reminded me of a friend named Kevin. This put me at ease. After all, this was a little stressful. I really didn't know quite what to expect with this pic line except I was going to be hit with a needle and then have a line jammed through my arm veins to a major vein near my heart. A little spooky.

I went in and laid down on the table. The guy "Kevin" prepared my arm for the procedure. The only time I got nervous was when he did not apply a desensitizing cream to my arm. I'd read that they numb your arm with this cream that takes as much as an hour to go into effect. It seemed like he was just going to do the procedure without any numbing agent. Then he starting shooting me up with novacaine needles. He gave me 2-3 needles inside my upper arm right below my armpit, where he then inserted the PICC.

The novacaine was not really any more painful than a typical IV stick. I was only able to feel the sensation of the tubing/line being feed through my vein at the point of entry. I did not feel it inching through my body and did not feel anything in my chest.

The whole procedure was very efficient and I was in and out of the hospital within an hour. The other good news is that I shouldn't have to have the PICC taken out and reinserted between treatments. People have PICC lines in for as much as a year, and the two - three months that i would need it is no problem at all.

So what are the benefits of this PICC line? Well, primarily it allows the docs to administer chemo drugs direct to stronger veins and will allow that continuous 4-5 day feed of 5FU I get beginning Monday. It preserves the veins in my arms from further damage, as chemo really fries them. Docs can also take blood samples painlessly from my pic rather than sticking me. So, this is another nice feature.

The other option that is more common is a cathiport, which is surgically inserted below the skin in your chest. It performs a similar function, but I've heard that these must be kept for a least six months before you have another procedure to remove them. I liked that the PICC line could come out as soon as I didn't need it.

Anyway, I'm doing pretty well today. Yesterday wasn't the greatest, but I like when I'm able to bounce back from a bad day and have a good one. It's a sign that things are shaping up. Even my mucous seems like it's beginning to wind down.

Latest Doc Visit

2007-11-30T11:35:00.000-05:00

"In the midst of winter, I found there was, within me, an invincible summer."
- Albert Camus

Here it is, Friday and nearly December. As rough as the treatment and recovery process has been, it's amazing how quickly time passes. I am very thankful for this, because I know that every day that passes is another day closer to my being able to eat, speak, and live fully again.

Yesterday, for the first time in 3 weeks, I left my house. Not only that, I drove . . . to two appointments that I had. It was great getting out of the house, and while my weak muscles reminded me how hard this battle has been, the throaty sound of my GTI's engine reminded me how great life is.

My first appointment was at 9.15am at my local dentists. While the Penn dentist was great, it just seems too far to go and the office staff there were unpleasant. So, I chose to go to my local dentist office. They, unfortunately, see a lot of head/neck cancer patients and survivors and are too familiar with radiation effects on dental hygiene. Dr. Walker looked at my teeth, and I was abit afraid because I haven't been able to tolerate daily fluoride tray placements at home for weeks. They would make me sick, so I have relied only on brushing. I remembered my Penn dentist warning that people who usually see a cavity every other dental visit often get as many as 40 cavitites after radiation each visit. I wasn't sure what to expect. Well, my dentist took a good look and told me she was very impressed. Not only did I have no new cavities, but there was not even any calculus/tartar on my teeth. The good news is that she said my dental care was great, but even better is that there's enough saliva production to help my teeth! My production is among the best she's ever seen!

My second appointment was with Dr. Dougherty at Doylestown Hospital for my next three chemo treatments/hospitalizations. As you remember, Dr. Sherman at Penn was kind enough to refer a colleague of his here in Bucks, so that I would not have to spend 4=5 nights down in the city in the hospital for my treatment. I would prefer to stay closer to home and Doylestown is only 15-20 minutes away.

It was such a pleasure not having to drive all the way into the City for my appointment. The country setting of the hospital is so much more relaxing, the cleanliness and spirit of the place was much more calming than Penn. I felt pretty good going in.

Dr. Dougherty herself seemed very nice and knowledgeable. More importantly, we talked about my treatment and she sees no reason for me to be hospitalized at my age and level of health. They will install a PICC, a catheter line, into my arm through which the cisplatin and then 5FU will pass. They'll give me the cisplatin in the hospital, but then i'll spend the next few nights at home receiving the continuous 5FU dose. Then I'll return to the hospital for a check, and they'll remove the PICC line. So, I'll be able to do this from home! Fantastic!

We scheduled my PICC line insertion procedure for Dec 6 and my chemo begins Dec 10.

The other bit of good news is that I actually gained 10 pounds over the last 3 weeks. I'm at 189, which is only 10 pounds below my normal weight. I expected to weigh in around 175.

Things weren't all positive though. Dr. Dougherty examined my neck and still feels a small lump in my neck. She estimates about 1cm x 1cm. She said the chemo may elminate it, and if not, surgery would be needed. So, please keep praying for the chemo to work on the lump in my neck. If we can avoid surgery, it will really improve the quality of my life and chances for survival.

When I go for my MRI next week, we'll know exactly what's left in there.

I'm upbeat, and no longer dreading the chemo. Bring it on. It's the next step in getting and keeping me better.

On the Upswing

2007-11-23T11:48:00.000-05:00

"The robbed that smiles, steals something from the thief."

~William Shakespeare, Othello

Yesterday was Thanksgiving and although I have had to postpone my full-on turkey feast for the time being, I have good news to report. I'm STARTING to feel a little better.

I've been sick a few times the last few days, but for a couple days before that I did not get sick at all. My energy level is still low, but I am getting more calories again (2k or so). In fact, I wanted to try to swallow some water for the first time in like 8 weeks yesterday, so I could feel good about progress. I was able to successfully swallow a sip of water. I threw up right after because of the mucous, but the water itself got down and the swallow mechanism itself till works!!!! Hopefully, my mucositis will begin to thin out some time and I'll be able to drink water and then move up to shakes and eventually food again. I know that when I can eat again, I'll heal like a beast.

I'm talking a little bit in spurts when my throat is ok. I'd say I get out a few sentences a few times a day. I'm trying to do more and more of it. Again, it's the damn mucositis that's slowing down things there.

I'm definitely feeling a better than I was last week and the week before. Hopefully a week from now, I'll feel even better and so on.

Hope you all had great Turkey Days. I'm looking forward to having a turkey dinner with my family when I can eat again. I'm dying for some of Shelly's mom's stuffing . . . it's really unbelievable. Then again, almost all food looks really good to me right now. I still turn my nose up at bean casserole though.

Just Fighting

2007-11-19T12:24:00.000-05:00

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
~Mother Teresa

So, here I am about two weeks after my radiation treatment has ended. My lymph nodes are very small, and I'm not sure if I can feel them in there any more or not. That's the good news.

The bad news is that recovery has been gruelling. I wish I had better news, but the fight has been very difficult the past few days. Yesterday I had a pretty decent day after what was 48 hours of real trouble. I was vomiting a lot and unable to take in more than 700 calories per day . . . just two stinking little cans of food. I felt like hell most of the past two weeks, actually making me wonder if I could possibly get through this. Not that I have much of a choice. With little sleep or nourishment for days, plus all the constant mucous, frequent vomiting, exhaustion, etc. it was a very dark time . . . and here I thought things were supposed to start getting easier.

Talking to others, I've learned that recovery generally doesn't begin until 2-3 weeks after radiation ends, and can take 8-12 weeks. I'm not sure how my additional chemo rounds will delay the process, but I imagine they'll drag things out a bit.

It's frustrating after having invested so much to getting better, that I just seem to be feeling worse. All the same, I'm hopeful that things will turn for me soon. My mom and Kristina have been amazing with their support, and I worry that they'll be exhausted by it all. Shelly's visits are very helpful, too.

I've definitely hit a wall where I can't use intellect to combat my illness any more, and it's as much of a pure physical as an emotional/spiritual struggle now. I'm down to 175 or so, and today I'm feeling better than I have.

To those who leave comments, you have no idea how much they mean to me. When I can't post because I feel so bad, I sometimes look back on comments and draw strength from them. Your prayers and good wishes keep me going.

Step One: Initial Treatments Done!

2007-11-09T11:04:00.000-05:00

OK, so the good news is that I've completed my radiation treatments. No, I do not glow in the dark. The radiation will continue to work on my body for several weeks and gradually, over the next 6 weeks or so, I should begin to recover. I expect I'll be able to eat, something, again in a month or so and I'm excited. Even something as simple as pudding.

Right now, I'm still progressing through the waves of my last chemo treatment as well, so in another week or so, I should be pretty much in the recovery business.

There are two big looming things in my cancer fight now.

1. The tumor on the side of my neck is very small, but has not yet completely disappeared. The radiation, as I noted, will continue to work and there is a real possibility that it will destroy what's left of the tumor. However, there's also the possibility that it will not. This would most likely mean surgery to remove these lymph nodes. This is a very big deal and if you're wondering what specifically to pray for, pray that the radiation destroys this tumor.

2. My second series of chemotherapy treatments begin in about a month. These will be a series of three 96-hour hospital stays where I will have chemo drugs pumped into me around the clock. I'm not thrilled by this prospect, but I'm told this is an extremely effective followup to my iniital treatments. I've seen few people who've gone through it, and my doc explained that few people make it through the initial chemo/rad treatments as well as I can. Very often, the toxicity of the initial treatments is too much to allow patients to pursue this Phase II. So, I guess it's a testimony to my youth and toughness.

So, that's what's ahead. What's going on now? I'm feeling ok'ish. Like I said, battling chemo nausea and the ever-present mucositis. I'm at least well enough to blog, so that says something.

I'm very blessed to have the care of my mom, Kristina, Shelly, my dad, and the well-wishing of so many good people.

Here Comes the Sun

2007-11-02T13:33:00.000-04:00

It's Friday, and I've got a nice weekend to recover without any hospital visits. No getting stuck with needles, hanging out with nice, but germy, people in a waiting room for hours, no answering the same questions to 3 different doctors and nurses, and no need to carry a cancer patient survival kit* everywhere I go.

More importantly, I am down to my last week of radiation treatments and this coming week, I'll get the last of my first cycle of chemo! One more day of chemo and 5 more days on that radiation table. At this time next week, I'll be done.

Since I wrote last, things got pretty rough for me. Honestly, I was barely living, fighting like hell to hang in there and endure until my body could get better. It was no fun. Monday after my radiation session around noon, the docs took me to the ER at Penn. Kristina, my mom, and I were there until about 7.15pm. They took x-rays, ran various blood and phelgm tests, and took a CT scan of my head. They found that I had a sinus infection on top of everything else that was complicating my mucositis, and gave me antibiotics to help fight it. After a few days of antibiotics, I feel a hell of a lot better.

Not only that, I can breathe through one of my nostrils again. After breathing only through my painfull raw, shredded mouth for weeks, it was an amazing feeling. I'm not doing it justice, but it felt like such an uplifting victory to be able to breathe with my mouth shut once in a while. It sounds really pathetic here.

The good news is that I am feeling very good. My spirits are soaring and I am excited to complete the first phase of my treatment plan next week. It's been a tough seven weeks of gradually increasing pain and discomfort. The future holds the opposite, every new day will be another day of recovery and regaining parts of myself that I've had to do without. I'm just thrilled to get to be me, so I can show my mom, Kristina, Shelly, my dad, and everyone who has helped how much they mean to me.

The constant cards and comments here have been amazing.

The fun part of cancer is over

2007-10-23T14:31:00.000-04:00

'The cuckoo who is on to himself is halfway out of the clock."
- Wilson Mizner, playwright

I've got 21 of 35 radiation treatments done, and 2 of my three primary chemo treatments under my belt, so I'm really past halfway here.

I've been pretty lucky with my chemo treatments so far. I have tolerated these without much nausea (caused by the chemo) and without much trouble except for some permanent high frequency hearing loss and ringing in my ears. As an avid target shooter, this was probably in my future anyway. Honestly, it's not bad because it doesn't interfere with conversation and I know in time I'll get used to the ringing and tune it out.

The radiation side effects have been very rough, though. I can't lie. The radiation has burned my throat and made my mouth a little raw, leaving me with a constant briny taste in my mouth, but the worst part of this that I have a constant heavy amount of phlegm. I know gross. This is more than just inconvenient, though. It's overpoweringly nauseating, requires me to constantly cough/spit it up, and has made it impossible for me to eat, sleep, or talk. It's my biggest cross to bear in the whole treatment. Medicine has been ineffective to combat this. Fortunately, this will slowly disappear after the radiation treatments stop and is not a permanent side effect.

I knew from reading other posts that around Week 3/4 things would get pretty hard, and here I am in Week 5, with a few weeks of treatment to go and then recovery after.

There are times when you struggle to take in calories through your feeding tube, just to get sick and lose all those nutrients. Your eyes water from vomiting and you feel awful. I give myself two minutes to feel sorry for myself, and then chill for a bit and then get those calories (and hydration) back in there. Getting sick is more a matter of inconvenience than any sort of grossness for me now. It physically burns a bit, but then you rinse with baking soda/salt/water and get right back in the fight.

Similarly, it can really suck when you get your shower and are heading out the door for treatment, and then the cap on your feeding tube pops open and you spill Ensure all over your shirt, pants, etc. Sometimes, it will happen again right after you've cleaned up and changed from the first incident. These times just show me that God loves to fuck with me, and has a great sense of humor. What matters is that you just gotta do what you gotta do. Get changed, get that food and water back in you, and go about your business. Cursing and blowing up doesn't help . . . I've tried it.

Sorry to share this unpleasantnesss, but I wanted to be honest on this blog for people who are going through this sort of thing later. I want people to know what to expect and honestly how it feels to go through treatment.

All the same, when I keep my mind engaged I can forget about the side effects for short bursts and let my thoughts take me to the world outside cancer. I think about things like my Daytona Coupe, fantasy football, the theater company that I am a part of, and many pleasant memories of travels and good times. Either that or I watch an episode of It's Always Sunny in Philadelphia and just laugh for a half-hour.

This cancer-fighting game is a battle of endurance. I can definitely outlast the treatments, and still keep my spirits intact. I just pray that all this hardship is not in vain, and that we get rid of this cancer and it never comes back. It would suck to go through all this and still lose to cancer.

Yum

2007-10-21T12:18:00.000-04:00

Right now, I would really love to have a buffalo chicken baja wrap with lettuce, tomato and ranch dressing, as well as some golden brown french fries.

I've already decided that after my treatments conclude and I can eat again, I'm going to become a fat guy.

Week 4 Wrapup

2007-10-19T12:06:00.000-04:00

"Do something that scares you everyday."

OK, this used to be my motto to live by, but I think I've taken things a little to far with this whole cancer fight thing.

I'm hanging in with the fight, but things are definitely harder. It's rough not eating anymore, but I'm thrilled to be getting all the calories and hydration I need through my tube . . . rather than fighting and losing trying to eat by mouth. Still, I have to be sure to take some shake by mouth, or I'll lose my ability to swallow. It's tougher than you think, because right now my throat is sore, it always feels like I've got acid reflux going on, and everything I eat tastes . . . well, let's be kind and just say awful. Nevertheless, I have to keep the swallow mechanism operational, so that a couple months from now I can get back to Nick's Roast Beef sandwiches, Chick Fil A, sushi, and all those goodies I miss so much.

I've finished my #19 (of 35) radiation treatment, and have 2 of my 3 primary chemo sessions complete. There is definite progress on my lymph nodes shrinking and all, but honestly I'm beyoond being excited now. Now my job is just to be tough and to endure the side effects of the radiation and chemo. It's not easy not being able to really talk, eat, and even have the energy to live my normal life. Then again, I knew this part would be tough . . . tough and temporary. In another month, these treatments will wrap up. I'll begin recovering which will take a while, but I know that better days lie ahead.

There's so much I can't wait to do, and I feel such a massive debt to my caretakers. My mom, Kristina, Shelly, my Dad, my brother, they've all been unbelievable to me. I have no idea where they find the courage and strength not only to help me with tasks, but to smile and encourage while they do.

I'm very grateful to have them.

Half way There

2007-10-17T15:09:00.000-04:00

Sorry to all for not having a wonderful quote to start this post. Today is an important day for Dave he is 1/2 day over being half way through the radiation treatments. The past week has been a tough one but Dave is handling in Dave style. Monday was chemo day and Dave took that chemo with sheer determination and even smiled a few times. The side effects of the radiation are worse than the chemo. All feedings are now via peg tube. He does try and drink at least 12 ounces of liquid a day and so far is not suffering from any severe nausea or vomiting. The mucusitis is the worse for him and last night he had to sleep sitting up. Not a lot of words are spoken (mostly written or signed words) but when Dave speaks it is with that same lovely voice as always. Dave appreciates all your prayers and well wishes and this is what will get him through. The schedule for now is 3 and 1/2 weeks radiation and cisplatin dose 3 in 3 weeks. After that will be the 3 rounds of 5FU and then he will be done with treatment. Soon Dave will post again. Thanks to all and PRAY HARD.

2007-10-13T07:30:00.000-04:00

"His sickness increases from the remedies applied to cure it."
- Virgil, Roman poet

Forgive me for not posting the last few days, but I've had a pretty rough go since my last post. Plenty of nausea and vomiting, my throat and mouth becoming increasingly sore, and my ability to eat all but gone. Every time I toughed it out to force down a bowl of soup or shake, I would get sick and lose the precious calories and nutrients I need. Even drinking water was difficult and I became pretty dehydrated. A little of the hair on the back of my head also started falling out. All of these things are expected, but none are pleasant to go through.

Yesterday, I started using my feeding tube. It makes it a lot easier to get water and food in . . . but I still need to drink at least a shake or two a day to keep my swallowing mechanism operational. With the radiation, you can actually lose your ability to swallow if you don't use it. So, I will be sure to drink at least one shake a day to keep this working.

I'm actually glad to use the tube right now, because I've had it hanging out of me since the end of August and it's been nothing but an inconvenience. At least now, it's serving a very useful purpose.

This week has been a struggle, and it's left my body pretty beat up. I just know that the cancer is hating the treatments at least as much as I am. Whereas, I've lost 10% of my body weight, the nodes on the side of my neck are probably 1/4 or 1/3 of the size that they were before. My throat is so ripped up that I can't imagine anything could live there, so that nasopharyngeal cancer picked the wrong place to squat.

Now I realize why having a positive attitude is critical. You need it when you feel pain and severe discomfort. To fight to get your calories, even though it hurts to eat/drink and you've already thrown up your last two meals. You need to keep fighting through it.

The love of my support team helps me get through it, and so did a cute little message that a kid put up on a dry erase board easel at the hospital. It said, "Keep trying. God loves you." It was simple, cute and very timely.

Sweet Distraction

2007-10-09T14:17:00.000-04:00

“It's a massive motor in a tiny, lightweight car.”
- Caroll Shelby, creator of the Shelby Cobra, Daytona Coupe, and Ford GT40

My appetite's dropped off a bit, and is somewhere between my ravenous weekend appetite and the pathetic state I was in before. I'm pretty sure that I'm doing the 2700 calories that I need. My energy's been ok, and I've still battled nausea from time to time. Unfortunately, the inside of my throat is beginning to get increasingly sore.

Fortunately, I have plenty of incredible things keeping my mind off my present condition. Besides unbelievable companionship with Kristina, Shelly, my family and friends, I have a couple of great passions that I'm turning my attention to right now.

First and foremost is my Shelby Daytona Coupe replica car build. Last November, I bought a frame, body, and other kit parts from a company called Factory Five Racing. In addition, I bought a Ford Racing crate engine, a 392 cubic inch monster, along with a TKO 600 transmission, and loads of other performance parts from Ford Racing. Since then, my father-in-law Bill and I have been building what promises to be the most beautiful, high peformance street car ever made. Right now, we are 99.9% done, and just waiting for the body to come back from the paint shop so we can reassemble the car. Driving this car, even just starting it up in my garage will be as important to curing my cancer as radiation or chemotherapy. I'm telling you. It has been a long 11months getting this car built, and my mechanic father-in-law has done the lion's share of the work.

Right now, I spend time in the waiting room thinking about the finishing touches I'm going to put on the car, imagining what it will look like with its sleek black paint. Working with my father-in-law on the car was a great experience. I've sunk a ridiculous amount of money into this car, with thousands left to spend, and at this point, I just want to have the car done and road ready. I can feel it. We're so close . . . just in time for winter, which aint prime sportscar time. No matter. I will spend a lot of time in my garage just staring at the car, or just sitting inside. OK, I'll probaby make the occassional vroom=vroom noise when nobody's around.

In any case, I wanted other patients who might read this blog later to know that while you're in treatment, life goes on. By embracing the things you love, chemo and radiation are kept in proper perspective.

Feed Me

2007-10-07T19:30:00.000-04:00

"The poets have been mysteriously silent on the subject of cheese."

~G.K. Chesterton

OK, since Friday my appetite has been back . . . which is really weird because my taste buds and salivary glands have been zapped pretty good with radiation. I can no longer taste a lot of foods, even favorites like cheese. My mouth is pretty cottony these days. Still, with this going on, I've been eating like a bastard all weekend.

Pizza, cheeseburgers, milkshakes, ice cream, canned peaches (I love these nowadays), filet mignon, WaWa hoagies, New England clam chowder, French toast, bacon, bagel sandwiches, and even sushi (which was delicious) have all made their way down my gullet this weekend. Let's just say I had no trouble making my 2700-calorie/day goal this weekend.

My energy level and spirits have been pretty good. I've experienced some nausea here and there and I definitely feel my gums and throat are getting more raw and burned. In another week or so, they'll be a barrier to eating that I'll have to overcome. For right now though, all the eating of this good food is helping to fight infection and keep me strong.

With my dry mouth and taste buds zapped, I think this is what life is going to be like for me for a good long while after my treatments, and honestly it's very liveable. I can't talk for long without my mouth getting too dry, which is great for everyone else around. Finally people will be able to get a word in edgewise. Seriously though, I think it will help me be more judicious with my words.

I've got two of seven weeks of radiation behind me, and one of three of my first chemo treatments. Slowly but steadily we're getting through the treatments, and before I know it my treatment experiences will be nothing but a memory.

Thank you all again for your loving words and support. It means so much to hear from old friends, co-workers, and general well-wishers. I know your words also help my family and loved ones know they're not alone. God bless you.

I Feel Great

2007-10-05T15:23:00.000-04:00

“Quotation is a serviceable substitute for wit.”

= Oscar Wilde

Last night, I had a vanilla malt milkshake. My nutritionist would love the calories. My dentist would warn me about cavities. Screw them both. It tasted good and I loved it. From there, things just got better. I had a decent sized dinner of chicken casserole and mac & cheese, and peaches. I housed the stuff and drank a bunch of water.

I haven't felt as nauseous or fatigued the last couple days now, and I'm hoping that I've battled through my initial round of chemo and will have a week or so before my radiation and next chemo dose hit me.

All I know is that today I feel like a human being again, and I love it! I drove out to WaWa and bought a turkey hoagie, Smartfood popcorn, and a Tollhouse ice cream sandwich for lunch today.

So, yeah, there are bad days . . . but there are good days, too. Days like today.

Hmmph

2007-10-04T14:29:00.000-04:00

OK, so today I went in for my #8 radiation treatment and then to meet with my chemo doc for our regular blood work and follow up. I had a bit of bad news on both fronts.

#1: I lost 10 pounds. Mind you I had put on a couple extra pounds right before treatment, but weight loss is not good when y0u're fighting cancer. You need calories and nutrients to beat down the cancer. My doc is not panicking, but he did tell me to put in more effort and we'll see where we are next week.

#2: My doc confirmed that my nasopharynx cancer is EBV-related through my blooodwork. My DNA shows that I have been carrying an EBV-mutated gene that has caused my cancer, probably for a few years now. What does this mean? Unfortunately, compared to EBV-negative nasopharynx cancer, I am about 40% more likely to see my cancer spread distantly and less likely to survive. This is no reason for us to give up the fight. Not at all. The only real setback here is that it would have been nice to have been one of those non EBV guys, because I'd have an easier time of things. Instead, I know where we stand and because the large number of NPC cancers are EBV-related, I'm pretty much right where I was before . . . just one less miracle to hope for. I guess I'll have to go the old-fashioned route and beat it with faith, grim-determination and . . . I know, nutrition. Who wants to win the easy way anyway?!

“Living things have been doing just that for a long, long time. Through every kind of disaster and setback and catastrophe. We are survivors.”

- Robert Fulghum

2007-10-03T12:36:00.000-04:00

I've had a rougher patch than I thought for this early in the treatment. The first few days were not terrible, but I've been sick and exhausted a lot more than I thought since this weekend.

Last night I was running a dangerous fever. You see, during chemo your blood counts drop and you are very susceptible to infection for a period of usually a few days. During this period, the doctor tells you to go to the emergency room if you run a fever of 100.5. Last night, my temp (normally 97.5) was up to 100.1. My head was thumping and I was quite nauseous. The nausea hit me quick and I got sick, then took my anti-nausea medicine. I hadn't really needed it until now and the nausea just hit me so quick.

I'm no martyr, believe me. Now that I'm feeling nausea, I'll be taking those medicines. Until now, I just hadn't needed it.

My appetite's still pretty pathetic, especially for a guy who is usually a championship eater like me. I'm doing my best to eat and that's all I can do. I'm trying everything. Smaller more frequent meals. Favorites. It's just hard to force feed myself right now. I'm taking in what I can, because I know it'll get tougher as the radiation burns my throat, salivary glands, etc. even worse. Believe me, I'm trying to get all the nutrients I can to heal me.

My spirits have been better the last 24 hours or so. It's great hearing from everyone on here, and with cards and everything. People have really touched me with their gifts of Faith and spirituality. It's really touching that people are giving me their most powerful positive thoughts and prayers at these time. These beautiful acts really help give me hope.

“Hope is faith holding out its hand in the dark.”
- George Iles, American author

This Just In: Cancer Not Fun

2007-10-01T10:35:00.000-04:00

Amazingly cancer treatment is not exactly a pleasant experience. All in all, I believe I've had it pretty easy, but his weekend I had a few unpleasant episodes . . . but hey, this is chemotherapy we're talking about. Radiation?! They don't put stomach tubes in you for fun, you know.

It's like Horace says, "Nil desperandum." Never despair.

Since my last post, I've been VERY tired almost all of the time. My ears are constantly ringing, and my throat and nasal passages are not allowing me to breathe real well. This in turn causes me to cough a lot, popping the cap off my stomach tube and leaking all over myself. Yuk. I know. I'm finally getting to the point where I just accept the inconvenience of this, rather than be worried or grossed out.

I've been trying so hard to eat, even when I'm not remotely hungry. Honestly, I think I've been pushing myself a little too hard.

Until now though, cancer treatment has just been exhausting, inconvenient, a little messy and uncomfortable. Not massive, unendurable agony or anything like that. It's already not very much fun though. It will be amazing to have this behind me some day in the coming months!

Week One Done

2007-09-28T13:36:00.000-04:00

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!

And so it begins . . .

2007-09-25T19:56:00.000-04:00

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.

Calm Before the Storm

2007-09-22T00:18:00.000-04:00

"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.

Audio Baseline Test

2007-09-19T18:34:00.000-04:00

"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.

Whoops . . Sorry, Dr. Sherman

2007-09-18T14:14:00.000-04:00

"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.

Backstory (Long Catch Up Post)

2007-09-17T19:08:00.000-04:00

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!

Our Fight to Get Dave Better

Blog Retired

Spring Has Sprung (a leak)

Spring Has Sprung

Return to Work

No Longer Cancer Patient . . . Cancer Survivor

Big Day

Recovery Doldrums

Battling Back

Getting a little bumpy

So Far, So Good

Good Omen

What a great day today was!

I want to live, baby!

Great News: An Understatement

Another Health Scare

Rolling Along

Turning the Corner

And when the odds are against him And there's dangerous work to do You bet your life Speed Racer will see it through

Still Battling

Another ER Visit

Chemo #5

David Cole, Pharmaceutical Sponge

Latest Doc Visit

Can't Keep a Good Shaolin Monk Down

Happy New Year

Backsliding

Doing It

Year of the Cole

Back on the Sauce

Blind Sided

Phase II Begins

PICC Line Install

Latest Doc Visit

On the Upswing

Just Fighting

Step One: Initial Treatments Done!

Here Comes the Sun

The fun part of cancer is over

Yum

Week 4 Wrapup

Half way There

Sweet Distraction

Feed Me

I Feel Great

Hmmph

“Living things have been doing just that for a long, long time. Through every kind of disaster and setback and catastrophe. We are survivors.”

This Just In: Cancer Not Fun

Week One Done

And so it begins . . .

Calm Before the Storm

Audio Baseline Test

Whoops . . Sorry, Dr. Sherman

Backstory (Long Catch Up Post)

And when the odds are against him
And there's dangerous work to do
You bet your life Speed Racer will see it through