Tuesday, October 28, 2008

Onodaga County 911

Regarding my rather fascinating experience on the interstate last week, I thought I should let you know that I did call the Onondaga County 911 office the following day and spoke to an operator supervisor. I shared my concern about the telephone operator's recommendation that I pull off the interstate, park my car and then call the police for assistance. Before I could even finish my sentence, the supervisor I was speaking with let me know that the operator was still somewhat new and would be instructed to direct anyone else who found themselves in my position to a police station.

It was quite a relief to know that was not standard procedure...

My Current Chemotherapy Treatment

It would seem the side effects of my current chemotherapy treatment are going to be a little bit different than those I had in the Spring and early Summer. The hair on my head has begun to thin. I have found hair from my head on my computer keyboard as well as caught in the shower drain every day for the past week or so. No one has noticed because my hair is quite thick, but it is getting thinner. And what gets me wondering if I am going to lose my hair is the fact that I have only received two treatments. What will I look like in March of '09? All I can say is "We will see."

And no I am not worried. I believe that being born a man makes it easier for me to deal with potential hair loss. I will be happy to shave my head if the hair loss gets out of control. I actually haven't had bald head for about 20 years. I had it cut very short in 1999 - 2000, but not bald. I suppose it will be fun for change if it goes that way.

Thursday, October 23, 2008

Just Another Thursday Afternoon?

Over this last 17 months, I haven't done a whole lot of driving. On the rare moments that I have - following many months of bed rest - I found myself feeling strangely unfamiliar with the experience, yet thrilled to be maintaining some independence. When I first got back on the road, I would hear someone honking their horn and wonder if I had made a mistake. And I would also look around constantly, wondering if I might be doing anything wrong - thinking, "I'm on disability and bedrest. Should I be doing this?"

Well all of that passed and I became more and more comfortable driving until I really didn't notice it anymore. Until this afternoon...

I was about 2 miles south of Syracuse heading north on Interstate 81 (on my way to the Apple Store in Syracuse to get a diagnostic and tell me why our computer is crashing every day) when out of nowhere a big ole white pick-up truck pulled up next to me very quickly, window down with the driver screaming expletives at me as loud as he could. Clearly he felt I had done him wrong. Maybe I did. I passed an on-ramp just before seeing him next to me, so I believe he had just merged onto the interstate with us. Maybe he was driving way too fast when he entered the interstate from the on ramp. Maybe I cut him off as I changed lanes. Either way, he was furious and maybe justified, so I did my best to show it with a facial expression that I was sorry for whatever mistake I may have made. (I should point out that I am not on any cold medicine or under the influence of chemotherapy and thus swerving back and forth in and out of my lane. At most I simply didn't see him.)

His response? With blood vessels popping all over his beet-red face, he screamed, "PULL OVER!!!" Hmm. Now I'm not sure why he thought I was going to listen to him, but it was clear he felt he was in the right. And how did I determine that you might ask? By the 64 oz. cup of soda and ice that he threw at my windshield while we drove down the interstate at 60 MPH. Can you believe that? And because that wasn't enough to get me to pull over, he then sped up so that he truck was just a little bit past me and then started driving into my lane in order to force me off the road. Naturally, I hit my brakes and shifted to the left lane to place myself safely behind him, only for have him to hit his brakes and land himself next to me on my right - still screaming "PULL OVER!!!" - now with fire pretty much shooting out of his eye balls.

At this point it was clear to me that he was not going to let up anytime soon. So, wasting no time, I immediately dialed 911 and let the operator know my location and that an incredibly angry man in a white pickup was trying to drive me off the road. I think I forgot to tell her about the large cup of soda he threw at my windshield. But I did ask her if she would please send a squad car onto the interstate to intercept us.

The 911 operator said she was unable to dispatch a police officer to a moving vehicle and that if I wanted immediate police support, I would need to pull off the interstate, park my car and call 911 again, at which point a officer would be dispatched. Or I could provide her his license plate number and the police would track him down. Naturally I told her there was no way I was going to stop my vehicle while this guy is following me. So then she told me those were my two choices and asked what I would like to do.

I did a little thinking out loud not wanting to hang up and trying to come up with something besides following her recommendation to be a sitting duck. Then it hit me and I asked her if she could direct me to a police station. She said she would be happy to and directed me off of the interstate and onto the streets of Syracuse. Of course he followed me so I pretty much crept down the road to avoid having to come to a complete stop at any upcoming traffic lights or stop signs. However, once I was on State Street, the 911 operator informed me that the police station was on State Street on the left hand side and that once I was at arrived there, I could call 911 again and they would send a police officer out to assist me. I immediately said, "There is no way I am going to hang up and then call once I get there. This guy is twice my size. He'll punch holes in me before I ever see a police officer."

Surprisingly, she stayed on the phone with me as I searched for the police station. I thought I saw it, looked around, realized the building was an old bank, then looked in my rear view mirror to see the angry guy in the white pickup truck had pulled into what appeared to be a Rent-A-Center parking lot. I let her know and she said she would dispatch a police officer to that location and asked if I still wanted to someone at the police station. I declined. There was really no reason. He was gone and I was no longer concerned about my well being.

Yet as I drove and found my way back to the interstate, I began to ask myself, "Had I made such a terrible mistake that his response was justified?" That was when I realized that his actions were the worst display of road rage I had ever been dealt. Did I really feel like he may have been justified? Absolutely NOT. It just took me a minute to realize what the hell had just happened.

So as I got back en route to the Apple Store, I found myself being hypersensitive and way overstimulated by the vehicles and traffic control devices that surrounded me. It never hurts to be a little more conscientious of how I am driving, but I was definitely pushed - or should I say slammed - back into the post-bedrest mindset I was in many months ago. I couldn't shake it off on my way to the Apple Store, across town to lunch with my dear friend Pat, or as I drove all the way home from Syracuse.

Man! That vulnerability was right back with me in no time. I don't think it will last. But considering how much time it took for me to finally feel like I'm back in the "real world," this afternoon's experience certainly took me by surprise. Nothing like this has ever been part of my experience in the "real world," but I thought I would let you know how the early part of my afternoon went today. I really wish I got his license plate number. Hopefully someone else who was driving behind him wrote it down and made the call.

Wednesday, October 22, 2008

Some OTHER Side Effects

Two side effects of the radiation and surgery that I hadn't mentioned previously are permanent erectile dysfunction and/or sterility. And to be quite honest I was waiting to tell you about the former until I knew it was no longer a concern of mine. Apparently the radiation and/or surgery can damage the muscles or nerves involved. Sorry for holding out, but that's one side-effect I was not going to make public had the worse case scenario occurred.

So, I have breathed a sigh of relief - erectile dysfunction is not a side-effect I have been dealt. Thankyouthankyouthankyouthankyouthankyouthankyouthankyou!

Regarding the latter, it seems it has come true. Don't worry - I'll spare you the details. Let's just say it is highly unlikely I will have - or should I say "create" - anymore children, which is fine with Daniela & me. I should acknowledge that haven't been tested, but there are some minor changes I have noticed that lead me to believe I am in fact sterile. We were warned of this prior to my receiving radiotherapy & surgery. We were also given the opportunity to bank sperm for which we opted out. We planned on having one child together. If we choose to have any additional children, we will adopt.

Tuesday, October 21, 2008

It Really Is Gone

I received an email reply from Dr. Allerton today and he ordered me to post-pone my chemotherapy for another week, so that I can get over this cold. Part of me is absolutely thrilled that the chemo has been postponed again. Any day I don't experience the side effects of chemotherapy is a good day. And I will try to enjoy my chemo-free time without too much guilt.

Yeah. I find myself feeling a little guilty because I am so thrilled to be free of the chemo side-effects. Then, I give myself permission to enjoy this temporary break from chemo. There's plenty of chemo drugs available to me as soon as I feel better.

And, it's been nearly three weeks now and I still don't feel so great. The chemo definitely impacted my ability to bounce back from the cold. I'm crossing my fingers that this cold breaks soon. The chemo has to be out of me - at least significantly enough so that I can get past this nonsense.

I'm also grateful that my body was determined to be free of any traceable cancer. That makes it a little easier to not do the chemo at the moment. It's not like the cancerous tumor is still in me.

Man. That just made me burst into tears. I still can't believe it's gone. That stinking little tumor just wouldn't die. Well, not the way I wanted it to. Eventually it did die. But that's not what brings tears to my eyes. What brings tears to my eyes is that it really is gone.

Sometimes it's eerily quiet in my mind. I spent 17 months wondering if it was going to get worse - if I was going to get terrible news after a scan - waking up and remembering I had cancer - scared of the worst case scenario. I don't have those thoughts anymore. And on occasion I realize that is one of the things that is different from the way it was before. No more terrifying thoughts - a huge reason for all the quiet in my mind.

And I am no fool. Cancer has a recurrence rate. That is true. But today, there is no cancer in me and right now I don't think I can express what that feels like except to say that whatever are your greatest joys, that bring the most tears to run down your cheeks, that's about as close as I can come to giving you an idea of how I feel. And, I believe I am almost at the end of this journey - once the chemotherapy is complete in March.

Sunday, October 19, 2008

I Was Mistaken

Man! My cold is definitely not gone. It definitely stresses me out to have this cold return. I shouldn't even say return. This cold has been lurking around my system for 2 1/2 weeks. I'll definitely get an email out to my doctor tomorrow and figure out what the plan is.

Feeling Better

My cold finally seems to be going away. I feel far more confident about my chemotherapy treatment on Wednesday now that I'm feeling better. Now if I can just get myself back on a normal sleep schedule.

Tuesday, October 14, 2008

I'm Back

In case you're wondering, I haven't posted much lately because I wanted to keep the WELCOME entry visible to any new readers who found out about the blog via this recent series of articles that we were fortunate to have in three different newspapers.

Well, it seems the blog address only made it into one of the three papers, so there weren't very many visitors. And just imagine - all this time I could have been filling your ears with multiple entries describing how miserable I've been feeling.

Just kidding!

Don't get me wrong. I genuinely appreciate the articles in the paper. In fact I'm thrilled about them - informing people about the benefit, my CD, and how happy we are about my positive progression throughout this diagnosis. Not to mention the opportunity to acknowledge all the wonderful people who have contributed to us in so many ways. It's just that my intention with this blog is to reach as many people as I possibly can. Which I will continue to do.

Anyway, I am happy to inform you that I have been taking regular walks with with Daniela and Beau (and Max our dog, too) and enjoying this absolutely gorgeous Autumn weather. It seems like a nice thing - going for beautiful Autumn walks. Actually, it's absolutely incredible. I was put on bed rest essentially the day I got to BajaNutricare: May 14, 2007. And when I ended my Gerson treatment and began traditional treatment, I was in too much pain to be anywhere but on the couch. And then there was surgery recovery. It's still a new thing to be going for walks. I LOVE IT.

Not to mention the turning of the leaves which is such a treat every year. Each years Autumn always comes as a surprise to me. Not like I'm surprised that it happens, but when I see the pinks and brilliant golds, I always wonder, "Were they that beautiful last year?" Just amazing.

So, I have had a cold which started on Sunday October 5th and was finally gone in time for the benefit. As a result, I also got to see our 10 year olds soccer game on Sunday [Tie: 3 to 3] and go shopping with Daniela & Beau which hasn't happened in...two years? It was definitely worth missing a little football for that. And now my cold is back. In my ears, nose & throat along with a side order of body ache. So, I emailed Dr. A (my chemo doctor) a request to post-pone my chemotherapy treatment until I'm feeling better. Shortly after, I received a call from his office letting me know my appointments for this week have been rescheduled for next week - same Bat-Time, same Bat-Channel.

I am quite relived. It was not a good feeling knowing I had an appointment for more chemotherapy while I'm feeling lousier than I have in the last few 10 days. That stuff takes a toll on the body and I'm in no condition for more right now. So, it's all rest, fluids, fluids, fluids and food. Man do I get hungry when I have a cold. And with a healthy serving of Tabasco Sauce on my evening snack,

thank you Kevin & Claire for a fantastic wedding favor

my sinuses are not as nearly stuffed up as they were a few hours ago.

Saturday, October 11, 2008


The benefit at Castaways this evening was just incredible. Daniela & I know that not everyone who wanted to be there was able to make it - we missed you. And thank you to all of you who were able to make it happen. It was a huge contribution to us and it was such a joy to speak with all of you. Many of you, I haven't seen since the last benefit or maybe I saw you once since then. It was a wonderful reunion with so many people. Thank you John Reilly Band, Kevin Kinsella, Hank Roberts & Eric Aceto, and Sim Redmond Band. You provided all of us with beautiful music from beginning to end.

There was also a nice group of kids with us this evening which brought a lot of playfulness to the evening. Thank you Castaways for making that provision.

I have to say I spent the last few days not wanting to be anywhere near the benefit. You're probably scratching your head wondering what I'm talking about. Well, it's very confronting for me to ask for your support. I didn't like doing it last year and I don't like doing it now. And I knew that once I saw all of your smiling faces all of that would change. And it did. It immediately disappeared and I spent the evening talking, laughing and celebrating the fact that as of July 21st, there is no cancer in my body. Heck I even saw Fil - my sisters first boyfriend - who I haven't seen in...18 years (?) and got to meet his wife, too.

Thank you Kelly for simply coming up with the idea of second benefit and then preparing those delicious Chinese hors'd'oeuvres. Thank you Patty McNally & Jerry Codner who made sure ya'll had as many servings of those delicious hors'd'oeuvres as you needed - not to mention all the various other things you probably did that I don't even know about. Thank you to Mary Whitig's boss who rolled in with ribs and cornbread. C'mon! How great is that??? Thank you Michelle Newhart for managing the raffle and donating a gift certificate to Karma Hair Salon and managing those great prizes - although that big case of Red Bull looked a little scary! (Not that I haven't made good use of a can of Red Bull or several during my pre-diagnosis days). Thank you Kevin Kinsella for managing the evening, emceeing, and closing out the night for us - since neither Daniela & the boys nor I had the energy to stay through the entire event. Thank you Dewey Neild for donating your beautiful Upstate New York waterfall calendars [only click on this link if you have a high speed connection]. Thank you Katie and crew for doing the merchandise table. It was wonderful to see Letters to the Prison City on the table for sale in a bar, even if I didn't perform. I've performed for years always saying, "No, we don't have a CD...yet." Now there's a CD, but no band!!! Definitely hysterical. And I have every intention to have another band sometime in 2009. Thank you to Will Russell and Nells for doing sound. And thank you Castaways for the venue and staff.

And as I promised, I wore a nice (yellow, not blue) paper mask the entire time I was there. It took a whole lot of something for me to keep that thing on my face. Who's the guy in the paper face mask? Okay. Most people knew. But it still felt a little awkward around the few folks who I didn't know, because even some of the folks I do know didn't know why I was wearing it. So, if you fit into that catagory, the reason for the mask is because chemotherapy seriously weakens the immune system and a common cold could easily turn into a serious cold and then turn into pneumonia. Then the chemo has to stop, etc, etc. Yeah. I settled on the paper mask. Look a fool or experience the said illness. Fool works just fine for me!

I probably forgot to acknowledge someone. Probably someone who was incredibly generous. I'm certain I didn't thank all of you who donated raffle items. Please let me know if you were missed. Your generosity means a great deal to us and we would like to acknowledge you.

And thank you again - everyone - for hell of a night. We love you.

Tuesday, October 7, 2008


With the recent newspaper articles regarding my family's and my experience of my cancer diagnosis and treatment, I thought it might be a good idea to provide any new visitors to the blog with a few links to some of my previous entries to provide you an overview of what the experience has been like.

So, feel free to click on any of the links below or you can pick and choose through all of the entries via the links on the lower right on side of the page in the blog archives. And thanks for stopping by! It's been and continues to be an amazing experience.

The Beginning
A Chance...
What Keeps Me Up at Night
Some Amazing Enema History
A Very Different World
Over and Over and Over and Over and...
With Deep Gratitude
Had I Followed My Gut
Had I Followed My Gut...(cont'd)
In the Hands of Angels
Optimum Health & Wellness
Chemo-Induced Dreams
The Cancer Conversation
An Incredible Wake Up Call
An Incredible Wake Up Call, Pt. II

the hero's journey

first, i remembered a few other people who are due a HUGE thank you for their help over the past year & a half:

lane family: for your grocery donation on the exact day it was needed. thank you for having your antennae up and turned on!

coach bernie: for graciously helping with rides to & from some games & practices.

betsy po: for the most comfy chair in the entire world!

rain: for your thoughtful, articulate, and poetic insights...for being a really skillful listner/reader, and for graciously making us food to thoroughly enjoy. namaste...

second, my intention was to post every monday. i did not make that happen. it seems like a monthly commitment, for now, is more manageable.

so, onward...........

I thought maybe i would share what being a caregiver has been like for me over the past year + during particular milestones on this journey...maybe this will be of some benefit to someone...

the day bert was diagnosed
so there we are, sitting in the cramped dr's office, and the doctor comes in. wow. i do not envy him, i thought. i knew the day he had the biopsy that bert had cancer. i could just feel it. from that place of "knowing" inside...different than intuition, different from hopefulness or worry...i believe this particular place of Knowing comes from the Divine giving you the Answer about whatever, so that you are prepared...so the dr tells us bert has cancer. bert & i looked at each other with expressions that spoke "of course". this is so whacked, AND it makes perfect sense. not because he had done something that would obviously result in having cancer, but something about the whole situation felt both familiar and "right". it's a very difficult thing to describe. it felt as though all was unfolding as it should be, and that nothing was 'wrong' or out of place. the overarching umbrella of emotion was a peaceful place...

now, i will also add, that along with all of that, UNDER the umbrella, was shock...i have a 4 month old baby in my arms, and told bert has cancer, and that is is serious. this poor dr couldn't leave the room fast enough, after he gave us the basic facts & told us who to go see next. he zipped outta the room like anywhere was a better place than being in that room with a nice, young family...and that crappy, crappy news. next stop was the surgeons office. we met a delightful PA named nan, and the doctor. they spent about 2 hours with us, doing an exam & answering the same 5 questions bert & i kept asking on a rotational basis...it was a dizzy flurry. we piled into the car to head home, after making agreements with the dr to begin scheduling chemo treatments somewhere...all the while in total disbelief. none of it made rational sense, and yet it did...

the difficult part was knowing we had to call our families that night. we couldn't even stall for time because they all knew about today's appointment. dang. we arranged for a conference call with bert's whole family after having spoken to my family. it was very emotional for everyone involved. unspoken fears permeated the stillness between sentences....we both took on a cheeriness to balance the equation. not in a fake way, but we realized right away, once we received the news, that we still gotta laugh. for us, laughter and silliness happens constantly, and to stop now would give life to a very dark cloud.

when i reflect on that day, i remember being present to 2 distinct things. the first was that "All is OK". i really knew bert was not going to die from this. again, from that place of Knowing. there was no wishing or hoping involved. not a reaction to fear. the second thing was that he was going to have a very difficult road ahead of him before he was to be well. that also came from Knowing. what made that the most difficult thing to stomach was that ultimately, this journey was going to be his, alone. alone in the context of many, many people loving & supporting him, but still, ultimately alone. like, i couldn't do it for him, which is really what i found myself wanting to do. it brought me face-to-face with the stark reality of the solitary journey we all are on. it is easy to forget that, especially when life is going along just fine, you are surrounded by friends, you are busy with the family/children/work...this reminder of the solitary journey was like a smack in the face from an old sorta-friend...i knew this place from my experiences with meditation, but it was all too different when i had to acknowledge my dearest friend on the planet ALSO had his own journey to be on. i was present to my own journey, and all i wanted to do was shield him from upcoming suffering. the worst was then knowing he had to go through the suffering to come out just fine. like luke skywalker going into the cave in star wars, or the knights going into the forest, one by one, alone, to search for the holy grail. notice, luke didn't bring his buddy along to face his deepest fears, nor did the knights implement the ever-safe "buddy system". the point of the hero's journey (ahh, joseph campbell, the world misses you so...) is to have the solitary experience for the sake of transformation. of course, you have no idea that's what;s happening until you "get it"...it merges you with your fears, and, if you are receptive to it, to God (or the Divine, or Buddha, or Love, or the Force, or Papa Smurf...you choose). you get the zap of Love, or God, when all circuits are closed, and you can only come out giddy, joyful, grateful and dancing!! the ultimate kicker of it all is then when you discover that all the while, the Divine was inside you the whole time, but 'first contact' could only result from this horrific scary experience with a side-of-suffering. sorta like in the movie men in black...the galaxy was teeny-weeny inside a marble size amulet around orion's (the cat's) neck....that HUGE Divineness that feels infinite and gigantic and all around you is actually tucked inside each & every one of us, deep in our hearts...we just have to go on this insane commando-style-human-mission to find it.

(we all must have agreed to this ahead of time as part of the rules-of-being-human-game)

from here, on the other side of all this, with bert in his last leg of healing, i look at him with such admiration, such courage. having cancer has just terrifying moments. how 'brave' would i have been??? he came out of the cave/woods a very different person. his "outta the cave dance" some days looks like the 2-step, other days it looks like wild bohemian dancing...so, if you see him out & about, and catch him looking around then clicking his heels in the air, you know why...


ps :that is me & baby beau...he was about 5 minutes old...

Local Newspaper Articles

Two local newspapers wrote very nice articles about my family's and my journey with cancer.

Click here for the Auburn Citizen article written by Christopher Caskey

Click here for the Ithaca Times article written by Bill Chaisson

There will be a third article in the Ithaca Journal sometime this week - hopefully Wednesday. It feels great to have these follow-up articles in our local papers to let the community know about the benefit and that these next 5 1/2 months may be the final chapters of this outrageous experience.

Low Level Side Effects Over the Weekend

I was hit with a cold over the weekend. So were Daniela and so was Beau. No fun. It's a little stressful knowing that chemotherapy can make a cold worse, but I'm getting plenty of rest, Vitamin C and Olive Leaf Extract [I highly recommend Olive Leaf Extract] and within the last few hours, I feel like I'm coming out of it. I hope Daniela and Beau wake up feeling better.

I had surprisingly few side effects following this last chemotherapy treatment I had on Tuesday, Wednesday and Thursday. I even went to the Ithaca Farmers Market on Saturday and felt relatively good. I guess what matters most is that I didn't feel dizzy or nauseas and that was quite nice. I also took an antacid along with an anti-hiccuping prescription on Friday, Saturday and Sunday. Combined they did the trick and the anti-hiccup med is also prescribed as an anti-nausea med. So, overall everything worked out and I feel relatively well. We'll see. I'm keeping my fingers crossed.

Oh. And in other news...the RED SOX are going to the Pennant!!!!

Thursday, October 2, 2008


For those of you wondering how I spend my time receiving chemotherapy infusions, I believe the picture to the left may provide you with some insight. It's easy to have fun while receiving treatment. I'm either asleep from the pre-meds or joking with the staff and my good friend Jerry.

Currently, my side effects are hiccups and heartburn - a nice combo. I finally requested a script for hiccups this afternoon because following these last two treatments I've had the hiccups on and off for two days straight immediately following the first infusion this and the last time - two weeks ago. The meds seem to be helping although I must confess I really didn't want to take pharmaceuticals for hiccups. But my throat was really starting to hurt and they even kept me up at night.

I am thrilled the Major League Baseball playoffs are happening while I am finding my way through this chemotherapy. I do not enjoy spending my days laying down not feeling well. So, if I am going to have to do that, it might as well be during the playoffs. A lot of fun and hopefully a whole lot of inspiration through the passion only playoffs can provide. Gotta love it. And one more thing...Go Red Sox!!!