Sunday, December 23, 2012

Stay the Course

Last week I was in a state of fear about the possibility of an eventual recurrence. Yet the banner at the top of my blog says:
My commitment is to transform our current cultural conversation about cancer from one of fear and dread to one that empowers those of us who have cancer, as well as our friends & loved ones.
 I had cancer. Cancer didn't have me.
Last week this was not the case. My cancer had me. My thinking had me. It was disempowering and thus it didn't serve me. As a Life Coach I support people navigating a cancer diagnosis so they stay empowered in the face of whatever circumstances they face. Ironically, I was not engaged in the work I do with others. Fortunately, due to the bold generosity of a friend's facebook message and one face-to-face conversation with a new acquaintance on the street, I realized I had stepped away from my commitment to living inside an empowering context regardless of circumstances.

It happens now and again. Of course it does. I'm human. But what was different this time is that I didn't reach out to my support network. Instead I got "stuck in my head." Or to put it plain English, I got scared and didn't speak up with the people in my life who are committed to coach me to create an empowering context to live my life from.

For over five years, I have dealt with painful and profoundly difficult circumstances, and for the most part, I have been able to be strong in the face of it because I consistently reach out for support/coaching when I feel confronted or scared or overwhelmed with my circumstances. As a result, I have remained grateful for my life and present to love for my life, regardless of my circumstances because the circumstances are not me, they are just circumstances. We all have them. But last week I was lost in my circumstances; lost in my fear and forgot there was a way out.

What I'm clear about now is that I can be concerned about my quarterly scan results each time I have a scan, but being afraid of what the results might be, does not serve me. Like being chased by a bear. It makes sense to be scared. But if I'm in a forest where bears live, there's no reason to be scared if I am not aware of any bears. Now inside that of that analogy, I have been chased by bears before, but I am unwilling to walk through the forest scared for the rest of my life. It doesn't serve me. The fear did serve me initially. It got me to take quick action so I could stay alive, but after that, it doesn't provide anything. It just gets in the way.

I am grateful for my life, my kids, my family, and so many people and things. There has been no sign of cancer in my body for over a year. Being declared cancer-free after receiving a Stage IV cancer diagnosis...that's pretty damn fantastic! I still feel like a stranger in my new life, but I'm okay with that because so much of my life is new and uncharted. Christmas begins in two days and will take us into the New Year. I love this time of year. But I won't create a resolution for the coming year. I will stay the course and be clear that I am healthy.

And whether you celebrate Christmas or not, I wish you a Merry Christmas and the strength to face powerfully, whatever circumstances come your way, for the coming year and for many, many more to come.

Monday, December 17, 2012

All Clear

The CT scan came back NEGATIVE. Doctor Kemeny reminded me it has been over a year now that I have been cancer-free. She said once I reach the two year mark, that will be an even greater milestone. Next scan in three months.

Sunday, December 16, 2012

Quarterly Scan

Monday December 17th I head to NYC for my quarterly CT scan & blood work. I haven't been this anxious about a scan since my very first one five and a half years ago. Honestly it feels like the results will tell me one of two tings:

A) You have had a recurrence


B) You haven't had a recurrence yet.

My once, nearly unshakable confidence has indeed been rattled. So much of what I thought was "my life" is no longer. A part of that has to do with the prognosis being "very likely only a matter of time before it's back." That on top of everything else has begun to weigh heavy on me.

I believe an individual's intention makes a difference. I just no longer have unwavering intention about my future.  If I at all felt like there was something holding me up other than me, I would feel a little more grounded. Yet from another perspective, my son & step-son give me reason to stand on my own. And so I do.

And I can't help but notice a change in who I am right now. When I heard about the news in Connecticut on Friday, I shed a few tears for a total of five minutes. A year ago, I would have shed tears on and off for a few days. I feel maxed out, like there's not much to give right now. Like a dear in the headlights. I know I should react but I feel kinda frozen.

Maybe after five and a half years of high stress, one things after another, there's going to be some impact. I'm exhausted. My emotions are by no means "off," but there appears to have been a shift and I feel wiped out. Every day.

I believe this will change over time. We find our way back. Human beings are incredible. But I can't help but wonder if this is some kind of post-trauma emotional crash of some sort. For those who don't interact with me regularly, some perspective would help. Groceries are purchased, food is cooked, laundry is done, the house is clean. Play dates and birthday parties and great times with the grandparents are common in my little boy's life. I'm just tired right now. Physically and emotionally tired.

Tomorrow I do a round trip to NYC. Hopefully driving home with good news.

Wednesday, December 5, 2012


My procedure has been rescheduled for January 2nd. Being on antibiotics for a nasty cold or whatever it is, makes me ineligible.

Saturday, November 24, 2012


I've scheduled my "stoma correction" procedure for December 5th. I don't think it's called a surgery because no body cavities are being opened and no muscles will be cut in half. Instead, my large intestine will be cut away from the skin of my abdomen, it will be pulled out just enough so it no longer folds (it kind of does an 'S' curve just before it reaches the stoma a.k.a. the place it exits my body), it will then be "trimmed" and then it will be restitched to my abdominal skin in the same place it was before.

Dr. Cagir says he may use some cadaver tissue to cover the area where the large intestine is herniating to keep it from poking out anymore. I asked him if I would have nightmares from part of a dead body being inside of me. His nurse practitioner said, "No." I then said, "Not from the tissue itself but from my brain freaking out about dead people being inside me." She shrugged and said I'd be fine. A terrible four-letter word, i.e., "Everything is going to be just fine." I can hear the violin shrieks from the shower scene in Psycho. Hell, I have vivid dreams when I buy a new fish for the aquarium. I can't wait to see what's in store if I do get the cadaver tissue. Maybe I'll be able to channel dead people after this. That would be a cool party trick.

The procedure may result in an overnight stay or it may be an outpatient procedure. I'm voting for outpatient. To tell you the truth, I'm hoping Dr. Cagir will agree to just use a local anesthetic. And then maybe I can watch the procedure perhaps with the help of a mirror. But after watching Braveheart, I'm kind of wondering if intestine being pulled out actually hurts like the movie suggests thus not allowing for only a local. Then again, if all goes well, only a very small portion of my intestine will be...extracted. If he does let me watch the procedure, I plan to quietly feign-scream, "FREEDOM!!!!!!!!!!!!!!!!!" as the inch or two of intestine is pulled out. It's always good to make people laugh when they're gently pulling out an organ.

So, I return to Robert Packer Hospital once again. Hopefully the recovery won't be much of anything. Crossing my fingers (and not my intestine).

Tuesday, November 13, 2012

The Great Life Cook Book

I want to share with you The Great Life Cook Book, hands down the best macrobiotic cookbook I have ever laid eyes upon.

In an earlier time in my life, I used at least five different macrobiotic cookbooks and did my best to maintain a macrobiotic diet. In these cookbooks I found recipes I enjoyed, but the design of these cookbooks were basic black & white text, with an occasional hand drawn image. Keep in mind, I was completely grateful for these cookbooks because they were quite informative. Plus, they were given to me by my aunt who was passionate about the incredible health benefits and she taught me weekly (every Tuesday afternoon) all about the essentials of macrobiotic cooking.

Unlike the The Great Life Cook Book, when I excitedly shared my & white...macrobiotic cookbooks...with friends who knew little or nothing of macrobiotics, they flipped through the pages pretty quickly, then handed them back to me and said, "interesting," with a look that said anything but that. It was as if I shared beautiful music with a friend by handing them a textbook about it. It didn't penetrate. And that was how I looked at those five books when I first saw them. But again, I had my aunt lit up and inspired about them, which lit me up and had me dig deep into them for the treasures they held. Plus, I knew the cookbooks were put together by authors and cooks who were highly committed to macrobiotics, and that made a difference for me.

However, with The Great Life Cook Book, you immediately find yourself flipping through a lovely, visual invitation to discover macrobiotics or expand what you already know about it. There are pictures on every page, so you know what the meal will look like, and Hey! I need pictures. When I'm looking for a good recipe, I'm not studying. I'm discovering. I want to be inspired to cook something delicious. And that's what you get with The Great Life Cook Book. It's filled with beautiful images of mouthwatering meals, plus it's designed seasonally so you can use recipes that are made up if the current season's harvest. Click this link to go directly to the The Great Life Cook Book website.

Disclaimer: Lewis & Priscilla are my friends, but I do not receive a free macrobiotic toaster with every cookbook sold!!

Sunday, October 28, 2012

Twenty Weeks Post-Chemo

I've received messages from people currently under treatment for similar diagnoses as mine, so I thought I'd provide an update twenty weeks out from my last FOLFOX chemotherapy treatment.
  • FOL– Folinic acid (leucovorin)
  • F – Fluorouracil (5-FU)
  • OX – Oxaliplatin (Eloxatin)
Side note: Oxaliplatin was removed from my prescription for treatments 11 & 12, due to the continued neuropathy.

The fatigue is still significant. If I try to go without at least eight hours of sleep, there's no chance I'll make it through my day without being exhausted. If I do get eight of sleep, I still even then feel exhausted by the end of the day. In any given moment I may have lots of energy, feeling and appearing to be fine, but it feels like I still have a long way to go.

The neuropathy in my hands & feet is still quite significant. I feel very little in my finger tips and the skin feels very tight and tingles to the touch. The soles of my feet feel numb and tingle all the time. When I walk or stand, my feet feel like I standing on round rocks covered with cotton balls. To walk and stand, feels very strange.

Also, my alkaline phosphate count is still higher than normal. This would go up whenever I received Floxuridine (the liver pump chemo). However, I am not experiencing side-effects from the count being higher. I'm just being kind to my liver as it heals.

On a personal note, I no longer feel like the person I was two years ago. The person I see in the mirror looks strange at times. And when I'm in a lot of emotional pain, as I am from time to time, it truly feels like I am dreaming. I have to remind myself that people will not stop behaving in ways that occur to me as selfish or unkind, simply because of my circumstances. People's humanness continues. We are all still managing our lives, to the best of our ability, whether it actually works or not.

So, my life looks very little like it did two years ago. Completely rebuilding my life while also undergoing a huge surgery, then seven months of chemotherapy, has had a powerful impact on me. I am definitely far more passionate than I have ever been, yet I no longer have much tolerance for people's angry outbursts. And that has a lot to do with how I still feel quite "raw" from the last two years. My nerves still feel exposed. People yelling and/or  being unkind when they are angry used to be something I tolerated. Something I considered acceptable if within reason. Not anymore. Of course I still get upset now and again. I don't raise my voice much. If necessary, I prefer to just end a dialogue at this point. Selfish...maybe. But with the possibility of limited physical existence, self-preservation, emotionally & physically, is a higher priority to me than it's ever been. I do my best to be good. Maybe not always nice, but good.

And now I'm a single father, two time cancer survivor, scraping along financially, with a high probability of recurrence. I actually feel quite 'single' after that mouthful. I once told a buddy, when I was in the thick of it all, I should start a dating site for people whose lives are train wrecks. But the criteria would have to be "as bad as Bert's life or worse." Can you imagine some of those profiles?!?!?! Ha-ha-ha! We laughed hard playing off of that one for a while. Fortunately some of the wreckage in my life has been tidied up a bit. At least the cancer appears to be gone. And in all honesty, my prayers are with anyone who is in a terrible situation. I laugh at my situation. No one elses.

Plus, I love plenty about my life. It's just some of the circumstances I prefer to do without. But don't we all.

On that note, people will sometimes try to play down the reality of my situation and say, "Anyone could get hit by a bus and die tomorrow." But a wonderful friend of mine with a hell of a cancer diagnosis responded to that by saying, "True we can all get hit by a bus tomorrow and die, but the buses in my neighborhood drive really fast and there's LOTS of 'em!" I thought that was an hysterical analogy. Great image, too!

On a good note, I love the kids more than ever, my music provides me endless joy, I'm learning many new things, and my friends are more dear to me than ever. A lot of other things are much different than they were a couple of years ago. And some things very much remain the same.

Sunday, October 21, 2012

Perhaps a Litttle Procrastination

On Thursday I had a CT scan of the abdomen in order to determine the source of an issue I've been having with my large intestine. My doctor found that my intestine kind of folds just before it exits my abdomen, which keeps things from moving as well as one would like. The options to correct it are
1) have surgery on the surface of my abdomen to straighten out the intestine (either outpatient surgery or an overnight stay)
2) have my abdominal cavity opened up and straighten things out from the inside (five hour surgery)
3) to do nothing and deal with it.

Opening my abdominal cavity, is definitely out of the question. I've had my abdomen opened enough for one life time - perhaps two. And not dealing with it doesn't work for me. So, I sit here thinking to myself, "I should think about this for a while," as if thinking about it for a while is actually going to change anything. Maybe I just feel better not rushing into it, which seems so silly but at the same time, it works for me right now.

Saturday, October 20, 2012

Moving Forward

Last week I had a colonoscopy and it was clear. I kind of expected it to be clear since I've received regular scans for quite a while now. Yet it was still nice to hear. I honestly don't know how long it will be before I am excited about being told I'm in the clear. As I've said before, my confidence was rattled when I was diagnosed with this recurrence. And my emotional state over the many months is still not something I recognize as familiar.

Over the last few months I've been up & down, going from being really blue about my health and having to rebuild my life, to feeling good and creating the life I want to live. The blues seem to be less frequent, but they still hit me pretty hard when they come. Honestly, I thought I'd be in a better space by now, but I'm not and I guess that's okay. I still have a lot of fun doing the things I love. I guess it just takes more for me to get motivated lately. It's obviously not a permanent outlook, and for that reason, I look forward to feeling more and more myself as time goes on.

Another part of it has to do with my doctors and nurses having told me, now that I've had a Stage IV diagnosis, a recurrence sometime in the future is highly probable. Of course I like to focus on the possibility of my being in the healthy, cancer-free side of that probability. Somebody's gotta be. And yet I am not going to pretend I don't "look over my shoulder" and wonder what's coming down the pike. I definitely do. I am still quite rattled from the recurrence not to mention all that preceded it. I really want to be past it all, which I suppose is a good sign. And perhaps I've forgotten how hard it all was. And maybe the impact is more than I anticipated.

So, I look around this apartment which we've been in since May 15th and continue to try to think of it as home. It is "home" in the sense that it's where I return for sanctuary from "the rest of the world," but something is missing. Cuddling with my boy on the couch and watching a movie this evening made the place feel a bit like home. Perhaps once the snow sets in, we'll feel like we're in our little den. I've also been thinking about having a house warming party. It didn't interest me upon moving in since I was receiving chemotherapy and waiting for the scan results. Perhaps it's time.

Friday, September 28, 2012

Good News - Negative Scan

I happy to say my scan came back negative and I feel a sense of relief. The knot of tension has been unwinding for the last couple days. Perhaps I will be joyful about it once many more come back that way. Next scan December 17th.

Tuesday, September 25, 2012

Quarterly Scan Tomorrow

I'm going in for my quarterly scan tomorrow. Fortunately at Memorial Sloan-Kettering, we get the results presented to us in a matter of hours, which I very much appreciate because I am definitely a bit anxious to hear the results.

Sunday, August 5, 2012

Second Time Through

So it's been almost six weeks since I completed my chemotherapy treatment and was told the cancer is gone. It was June 25th that I was given this great news and on that day I was incredibly happy. But then the days that followed were very different. I found myself feeling down & depressed.

Lately, when people stop me and ask how I'm doing, and I say "I'm ok," some folks are surprised, which is certainly understandable. The most accurate way I've found to describe how is feel is to imagine what it might have been like to have been rescued from the Titanic as it was sinking, delivered safely to shore and told to "Take care" & "Good luck." "Now it's back to business." So I stare at the people in the world as they go through their daily routines, wondering where I begin. Like if someone you love has passed away and you watch people who casually stroll down the street and enjoy their day, and you wonder, "How can they be so happy when I'm in so much pain?" It's not logical, but it's not uncommon either.

So, this second time through I'm not so quick to jump for joy. And in the moments I do feel somewhat confident about my health, I look at what's happened in my life in the last couple of years and I hear, "We now return you to our regularly scheduled programming." That program being the other pains in my life which I couldn't give a whole lot of attention to, because I was too busy trying to escape death for a second time.

It's not like other people don't have it worse than me. There's always someone who has it worse. I see people now and again and think to myself, I'll take what I've got because I sure as hell don't want what they've got. And yet, each person's hardest thing, is our hardest thing.

Music was one of the key pieces that lifted my spirits throughout my treatment and before that, it lifted me through the pain of my wife's sudden departure. But lately, I feel like I'm on a short hiatus from the performance part of music. I think we'll do a show in September up in the Prison City. Perhaps by then I'll feel somewhat myself. And in the mean time I still write what ever songs show up for me. Not exactly the happiest songs in the world. But I did recently write an upbeat song. And it's just about done. It just happens to be a sad upbeat song. Ha-ha! One step at a time I guess. And in the interim, I'm going to wander aimlessly for a while. Everything still seems a bit strange to me.

Saturday, July 7, 2012

Preventing the growth of blood vessels that feed a tumor

Of all the conversations I've heard connecting what we eat to the prevention and treatment of cancer, this one from Dr. William Li, of the Angiogenesis Foundation, which points to stopping the growth of blood vessels that feed cancer, seems pretty compelling.

Thanks Maria!

Click on the image below to watch the TED Talk.

Sunday, July 1, 2012

In the Clear or Perhaps Not So Clear

On Monday June 25th I had a post-treatment scan and the results were NEGATIVE! No sign of cancer, so no more treatment and the next scan is in three months.

I am greatly relieved. The day of the good news I was moved to tears, I was so overjoyed. And a couple of days later I was actually feeling depressed at the idea of returning to "normal" life. And a day after that, being the recipient of a good coaching session, I was back to feeling as normal as one might expect to feel. It became clear to me that without being clear about the direction I am headed, the mind will wander and create its own version. And the mind left to it's own devices, is not always a good thing. Considering all the concerns I have, it helps to now have some pretty clear direction. So now I am back to figuring out how to be a single father, how to manage my disappointment about being one, as well as how to deal with what I can't control when my boy's not with me. So it's back to that and all the other day to day things there are to manage.

After the good news, the friend that joined me for the trip celebrated with me by taking me to a ballgame at Yankee Stadium. It felt good to be in a stadium (relatively) full of people excited and joyful. I can use as much of that as there is to go around.

Wednesday, June 6, 2012

Treatment Regimen Complete

Today is Wednesday June 6th and I'm about to begin my last scheduled chemotherapy infusion, #12 of 12. As always they will send me home with a battery operated pump continuously pumping 5-FU into my veins until Friday morning at which point the pump will be disconnected and the nurses will invite me to ring the bell, a final treatment ritual here at the Cayuga Medical Center.

It's nice to be looking at the possibility of no more chemotherapy after Friday. And needless to say, it has been a grueling seven months. While writing this entry, I've tried multiple times to express the pain I've experienced going through the unexpected and badly navigated ending of a marriage. And each time I deleted what I wrote and have instead left you to imagine it. It has not made this experience easier, that's for sure.

Well, I never finished this entry and it's now Friday and the pump stopped at noon today. Treatment #12 of 12 is complete. I was with three friends when it stopped. It was a great feeling to turn it off and announce my seven month chemo regimen is now COMPLETE.

So many thoughts going through my mind. Scan in NY on June 25th. Should it be negative no more chemo and another scan three months later in September. If it comes up negative I will begin treatment for the treatment, detoxifying my body from the chemo; not an easy process but very important. Chemo can cause cancer. I want it out if my system. It's done it's job. Fresh carrot & green juices, liver supplements, etc.

In the meantime, it's no more chemo until at least until June 25th and I feel greatly relieved.

Saturday, June 2, 2012


Within the last week, the neuropathy [numbness & tingling] in my hands and feet has intensified. It is strong in my fingertips and goes up my forearms. It's also strong on the soles of my feet. I walked to the Ithaca Festival this evening and I was having a hell of a time because how the neuropathy had my feet feeling so weird while I walked. It seems it's going to gets worse before it gets better.

My doc recommended 100 mg of Vitamin B-6 2x day, so that's what I've been taking. I sure hope it helps. This is a weird symptom and a little disconcerting as well.

Sunday, May 20, 2012

A Change in Perspective

Has it really been a month since my last blog entry??? Wow! The boy and I just moved into our new place on Tuesday. Thank you to everyone who helped make this happen for us. Now that I think about it, this is what has kept me from posting anything. Diligently looking for a place in between chemo treatments then traveling to NYC less then a week before we moved. I have been incredibly busy.

Fortunately, I was able to receive a liver pump treatment on Wednesday May 9th, so my next systemic  chemo treatment is this Wednesday May 23rd. Even though Dr. Kemeny reduced my Oxaliplatin by 25% last time, the neuropathy in my hands and feet has continued, so the Oxaliplatin has been completely removed from my systemic treatments. I will now only receive 5-FU. When I asked how much nausea I should expect to experience, I was told there would likely be none. It ain't a walk in the park, but without it, the sickness is a hell of a lot easier to tolerate.

Following my meeting with Dr. Kemeny on the 9th, the nurse practitioner came in and explained how I will have a scan in June following my final treatment. At that point I told her that when the scan comes back negative, I would like the liver pump removed. She kind of smirked and then told me the reason they recommend keeping it in is because they have to clip the line to remove it. And once the line has been clipped, a clot forms and the pump can never be inserted into the artery again. "Okayyyyy," I said. "There goes that idea.."

Once my treatment was complete, my friend and I walked back to the car. As we walked, I looked at him and said, "Man, if I knew I could never have the liver pump again once it's removed, maybe I would have waited for if things got really bad." He gave me a look as if I had just spoken to him in a language he was completely unfamiliar with, combined with utter amazement that I was able to speak it. I half returned the look to him then realized what I had just said. "...maybe I should have waited until things got real bad." I immediately started laughing and said, "Keep it for two years? Perhaps not. Maybe I'll keep it for five. Or ten. Or maybe just leave it in for good!"

The minor downside to leaving it in is the saline refill required every six to eight weeks, possible adjustments to that schedule should I travel to a higher or lower elevation (because elevation changes effect the rate at which it pumps), and the possibility of infection since the pump is a foreign object. The rate at which it pumps is also effected by body temperature, so I am expected to avoid long hot baths. Come winter time, a hot soak in the tub is a must. I missed out this year, but this coming year I expect to take hot baths and have the saline refills scheduled accordingly. Perhaps if I agree to one 45 minute bath a week, they can adjust the solution accordingly. The longer they want it to last, the thicker the solution they prescribe.

So, I have two more systemic treatments and then I start treating myself for the treatment. Or to put it another way, it will be time to begin the process of detoxifying the chemotherapy from my body.

Thursday, April 19, 2012


I began my ninth systemic infusion today. As I got situated, I noticed a guy a few years younger than me receiving an infusion. I looked at him, started laughing, and told him I was supposed to be the youngest guy there and he was messing up my scene. We both started laughing.  It's just so strange seeing someone close to my age dealing with cancer. Sadly, we all know there are plenty of people of all ages managing a cancer diagnosis. It's just that I'm used to hanging out in the infusion labs and joking around with people 20 years older than me. So this fella and I talked for a bit and essentially agreed how there isn't much else to do but just go forward with it and live the lives we've got.

I won't have my boy this Saturday as I normally do. He'll be with his Mom. Saturdays that follow an infusion have become my worst days. I miss him like hell on the nights he's not with me, but it really doesn't serve either of us when I'm so fatigued and in pain. Fortunately after this infusion, I only have three more systemic infusions scheduled, plus one pump infusion. That's only four more Saturday's I won't see him within a ten week window. It will pass by before I know it.

And then, should scans and blood work come back negative, there will be no more anticipation of the coming chemo sickness. Again there's just about no nausea which is a blessing. And it could be worse. I know people in a lot worse shape than I am. I'm healthy and strong with no detectable cancer in my body. I'm just getting knocked around pretty good every couple of weeks. I believe June 6th will be my final treatment. And I'm sure as hell ready for that.

Sunday, April 8, 2012

All Clear!

On Wednesday April 4th, I had another series of appointments at MSKCC or as I now like to call it a day at the spa (thank you Brad).

I had a morning CT scan - chest/abdomen/pelvis - followed by blood work and a visit with Dr. Kemeny and her wonderful staff (no sarcasm there - they're a great staff). My CT scan results were all negative and my blood work looked good, so I was eligible for and received another liver pump chemo treatment. Great news!!!

And honestly, I had no idea how concerned I was about my scan results until I had received the good news, walked into the waiting room, saw my friend, and threw my fists into the air and smiling from ear to ear. You have to understand this is not my standard response. Whenever I received scans during my first treatment, for the Rectal Cancer, I had some concerns, but as time went on I became more and more confident I had nothing to worry about. They would say, "Good news Mr. Scholl. Your scans came back clean. You have nothing to worry about for another three months." And I would politely smile while I thought to myself, "I have nothing to worry about. This is my first and last cancer diagnosis." But now that I have had this recurrence, my confidence has been shaken.

I mean, I'm sure as hell not going to stop living. I love my life, even with all this divorce nonsense (little judgment there...). Sure my circumstances are not ideal, but I have my boy, my family & friends, music, Life Coaching to return to, and all the things I love to do. And as my friend's very inspiring father, a three time cancer survivor says, you play the cards your dealt. That's it. I may whip 'em across the room every once in a while, scream my face off and imagine doing things that would ultimately not serve me, but then I'll always go pick them back up and presence myself to deep gratitude, for the privilege of still being in the game.

So yeah, I threw my fists into the air  and beamed a huge smile from ear to ear. I chose to not yell. Like me when I was there at MSKCC four years ago with my wife and son, during this most recent visit there was a family there across the room from us - husband & wife with a baby in a stroller. I'll keep my celebrating to a minimum while their life is very likely being turned upside down. On that day four years ago, a cheering fool dancing around in cowboy boots in the scariest waiting room I'd ever been in would not have made any sense to me. So, once I could finally lower my arms, I grabbed my CD, the only copy I had in my bag, and gave a signed copy to my doc, who wanted one because she likes country music. The other staff will get theirs on May 9th, should my blood work make me eligible and fortunate enough for another trip down to MSKCC for another pump treatment.

That evening, we went to Tamany Hall, a club on the Lower East Side, to see a friend from home (whom I haven't seen in years) who manages the place, and to listen to some rockabilly bands. Some of those cats were passionate performers and damn good singers. It felt so good to be there. And the stage was looking pretty comfortable. Perhaps I'll have to try it out sometime in the near future.

Thursday, March 29, 2012

Three-Quarters of the Way There

I just began another chemo infusion this morning. As with each systemic treatment, I was sent home with a battery operated pump on a continuous infusion through Friday afternoon at 2PM at which point it will be disconnected, as it always is. So at that point, I will have completed my eighth infusion, which has me two-thirds of the way through my treatment! I'm very happy about this. As I've said previously, the emotional side-effects of this treatment have been surprisingly difficult, to say the least. Of course this doesn't exactly come as a surprise. Life has handed me a lot in the past year-and-a-half. I don't know what to do with it all, although I'm clear I will find my way ... in time.

A few areas of my life have been pretty incredible lately. I am very grateful for all the love in my life. And for the gift of music and the privilege to have it as a form of self-expression. At a personal level, my song writing exists as a conduit through which I release my thoughts, fears, passion, love, etc. Which results in one more part of myself no longer bottled up, unexpressed, circling around in my mind. Well, for the most part... Then there are those tunes that once I go public with them, there's no turning back. Those stay in my head for a while I suppose. But ultimately, they free my mind as well. And I can use a whole lot of that right now.

My friend Dustin always says something along the lines of, "What do you need for a good song? A few good chords and the truth!" That's my music in a nutshell. And when I'm lucky, those who listen can relate because they feel it too. Not to mention, performing with some damn fine musicians sure as hell makes for a far richer experience.

And in the mean time, if this round of treatment is anything like the previous ones, I'm in for a hell of a ride for the next five days or so. Lately I've felt like Luke Skywalker training with Yoda in the Dagobah System when he comes face to face with himself.

So please send some love my way on Friday and Saturday when all the side-effects - mental, physical, spiritual, emotional - start jockeying for position to whoop my ass. I'll update you on the winners. xoxo

Tuesday, March 20, 2012

Depressed, Hopeless & Angry

I'm surprised it's been 14 days since my last post, but now that I think about it, it's been 21 days since my last systemic chemo infusion, so there hasn't been too much to say.

What's at the forefront of my mind today is the power this chemo drug, Folfox, has over my emotions. With each systemic chemo infusion of Folfox, at some point I feel depressed, hopeless and angry. It has happened following every single systemic infusion since this treatment cycle began last November (the pump chemo has yet to have that effect). This time it showed up on Saturday March 17th and lasted through Sunday the 18th.

While the boy and I had dinner, watched a movie, then got ready for bed, I experienced a background of hopelessness. Not with him of course. I still laughed with him at all of his silliness and jokes. And we had a great time reading stories before bed. But the background thinking never ceased. It just wouldn't quit. After he was asleep, I immediately put on my headphones and did a hypnotherapy session and after it was complete, the negativity and hopelessness were gone and I felt good about my treatment and grateful for my life. On Sunday, we visited friends. The boy played with the kids and I watched basketball with friends, noticing these miserable thoughts as they passed through my head. Then when we got home and my little man was asleep, I did another hypnotherapy session and got back on track again. I did a third one early this afternoon.

I guess what amazes me is a) how I can always count on the depression and hopelessness to show up after a systemic chemotherapy infusion - guaranteed, and b) how intense it is. If a person were to show up and speak to me the way my thoughts show up at these times, I would be shocked at how ruthless and unkind the person was. And what equally amazes me is how effective the hypnotherapy is at represencing me to who I truly am; to my highest self; to the awareness that life is a gift and an opportunity to find love & gratitude for all things. And those are extraordinary moments.

And I do mean moments. Because it was an hour after my hypnotherapy on Monday that I was at the Department of Motor Vehicles, feeling very frustrated because after 3:30 PM, they don't provide the services I was in need of. Aaaaaaaahhhhhh! Yes, in the moment, I was a little frustrated. Hypnotherapy didn't turn me into an least not yet!

Fortunately, I went out to my car and just sat quietly. After about 10 minutes, I went back in and asked the person at the information desk if she could review my documents and make sure I had everything in order so when I came back on Tuesday, I would at least be prepared to complete everything and not have to go home and retrieve additional documentation. She happened to be in charge of the office and not only confirmed that I had the proper documents, but then she went ahead and processed all my info and handed me off to a cashier who completed the transaction.

Well, I chalk that up to the hypnotherapy, that is, my choice to just sit quietly and not go anywhere. I'd normally say that kind of inclination - to stop reacting and just sit quietly - was a result of what my morning meditation brings me, because it's definitely not my default reaction when things aren't going my way. But on a Monday morning coming off of a chemo infusion, my morning meditation is more hysterical than anything else. My minds just racing away judging and criticizing faster than I can keep up with. In fact, I can barely even sit still with all that chaos going on in my mind. It's like trying to meditate while someone's sitting next to me watching a battle scene from Platoon! Hahahahaha! So, again, I am grateful for the moments of gratitude and happiness I experience as a result of the hypnotherapy sessions which I'm clear I have been blessed to have in my life right now.

And in other news, Bert Scholl & Friends will be performing this Friday March 23rd at O'Toole's in Auburn. A little something I've been itching for to say the least!

Monday, March 5, 2012

With Deep Gratitude

It is with deep gratitude that I've had the privilege of removing the solicitation from the end of my Write the Next Verse video. (Click here to view the video). Now the purpose of the video is strictly humor. Please share it with whomever you think will get a good laugh!

Click here to read a letter of gratitude at

Thursday, March 1, 2012

Pump Chemo Complete

 Today's blood work revealed the same results as Monday's - Alkaline Phosphotase was low enough for me to do liver pump chemo. The only difference is that Dr. Kemeny reduced the dose. On November 30th I received 208 mg of Floxuridine. Today I received 52 mg of Floxuridine. The hope is that my liver will respond better to the lower dose and allow for more pump chemo treatments.

The only disappointment is the steroid Decadron (aka Dexamethazone) is included in the cocktail. I have had Decadron in the pump for the last month and I definitely feel it. I always feel a little edgy, I notice myself feeling less patient, and there's a numbness I feel around my teeth. I 'm really hoping that when the pump is refilled in two weeks, that Dr. Kemeny doesn't recommend more Decadron. I'm really over not feeling myself. And I'll do whatever there is to do that will allow for more liver pump infusions.

And yet there is another bonus to the pump chemo which is that I get to wait two more weeks until my next systemic chemo treatment which is a total of three weeks since my last treatment. It's nice to have a little break.

Monday, February 27, 2012

Psyched for Chemo!!!

My liver enzyme counts, specifically Alkaline Phosphotase, have returned to normal levels so I will be receiving liver pump chemotherapy this Wednesday. When my doctor's nurse called me and gave me the good news, I yelled into the phone probably louder than she would have liked. And in the next moment I was teary eyed with joy & relief for the opportunity to receive another direct infusion. It's a strange world when a fella's teary-eyed and cheering because he gets to do chemo!

And in all seriousness, this is why I went with Dr.'s Di'Angelica & Kemeny, because they provide the opportunity to use the Hepatic Arterial Infusion pump which significantly reduces the possibility of a recurrence in the coming five years. I would like it if the time frame for no recurrence was a bit longer than five years, however five years is the window in which doctors work in oncology. Won't it be a wonderful time when 20 years is the reference point or perhaps in this lifetime. And right now this is what we have and it's only getting better.

Wednesday, February 22, 2012

Getting Through Each Day

It's about 12 hours since my chemotherapy infusion began and I feel 95% nausea-free. Relatively speaking, it's pretty great. Immediately following the infusion I picked the boy up and brought him to an evening Ash Wednesday service. Yesterday he requested we go [BIG SMILE]. I was so glad I could accommodate his request. This is the first Wednesday/Day 1 of an infusion, that I've felt at all like doing anything other than head home. This includes all seventeen infusions I had in 08-09. I'm currently receiving IV Emend and combining it with tablet form Zofran and the results are clearly very good. And earlier this evening, before 7:30 PM, I was 100% nausea free which is tremendous. And as I said in a previous post, I'll be thrilled when I'm provided a 100% effective anti-feel-lousy-and-exhausted-medication. And if I had to choose, I'd take the anti-nausea meds 100x over anything else.

What's also come up is that a lot of folks seem to be under the impression that because my first approach to healing from cancer was Gerson Therapy, that I eat some version that diet or another very restricted healing diet. That's actually not the case. I don't mention this much but the reality is that my priority is to find my way through the circumstances I've been dealing with for the last year. The cancer diagnosis is easy. There's no arguing with it, so there's no point in getting upset about it. Plus, there's no sign of any cancer cells anywhere and I'm in the midst of a highly effective treatment. At least for right now. But what's far more difficult is people. One can get infuriated with people because they have the capacity to change their behavior should they choose to, but when they don't it can be maddening.

Yeah the treatment is tough, but it's these other circumstances I find heart-breaking. That's a big part of what I manage. And I'm clear heart-break and feeling mad are, minimally, not creating healing. And the sooner I let go of the expectation that I can get other people to live with integrity, the sooner I'll be free of of the upset. And for me part of that is to embrace my lack of patience and sometimes anger with others. Resisting such feelings definitely doesn't make things better. And I'm not waiting around for them to disappear. So instead I do what I can to embrace the feelings. It's part of the package until I find the capacity to be another way. I aspire to a great deal, but in the meantime, this is who I am.

And my #1 commitment is being a loving father. So to be 100% present, loving and patient with my boy, as well as minimize the upset I have with other people, and provide myself the space to rest and heal, I work one-on-one with a Life Coach on a weekly basis. I also engage in regular exercise, meditation, prayer, my music, and hypnosis. This "keeps my head above water" - and I simply don't have it in me to take on another thing. I'm totally maxed out with everything I'm dealing with, and part of caring for myself is to allow myself a lot of rest and fun. If I took on a diet transformation, researching how to do it all, doing all the necessary prep work, etc, etc, I wouldn't have to time to be with my boy. And if things don't turn out as I hope, I will have missed the opportunity to be with my child while we are both together on this planet. And if things turn out well, then all is well. I genuinely believe that my spiritual path is what is providing me healing and what has people look at me and tell me how healthy I appear.

What I do is eat very well. Fresh, organic well-balanced food. And lately I have had a craving for fruit far beyond the norm for me. Kiwis (a powerful food for the liver), grapefruit with raw honey - LOVE IT, apples, and oranges. I am devouring the stuff and just can't get enough of it all. I'm also supplementing my diet with a Gerson Therapy Green Juice as well. Green Juice is another excellent food for the liver. So that's the scoop with food. And I look forward to when things are different and I have the capacity to go beyond where I am right now.

Monday, February 13, 2012


I feel compelled to mention that in my February 12th post my intention in sharing about the cold sensitivity was to give you an insiders view of what Oxoliplatin can be like. I'm happy to put gloves or a hat or wool socks & my winter boots, and the sensations will go away for the most part. I just thought it was a trip to have such weird side-effects and thought you might find them as peculiar as I do. As far a real problems with side-effects go, I met a fella whose entire body trembles from his chemotherapy side-effects. The guy just wants a break. And he doesn't get one. Me? I just have whacky "pins & needles" and a frozen face now and again. My big hurdle was putting on my neck/face warmer so the boy and I could zoom around the ice rink together.

Sunday, February 12, 2012

The Other Crazy Side-Effects

I've been meaning to expand upon the side-effects of the chemotherapy treatment. In addition to the nausea, fatigue, and feeling painfully hungover, there are also some less known and peculiar side-effects. The craziest one is the cold sensitivity I experience, as a result of the Oxaliplatin. Whenever I leave the hospital after the infusion and the weather is cold, my skin is painfully sensitive to the air. Any time the temperature is below freezing, the wind blowing on my face, it feels like I'm walking head on into a freezing rain storm or more specifically, as if I'm been walking into a freezing rain storm for a few minutes and my face begins to get numb; my hands & feet feel like I have piercing "pins and needles," the sides of my eye lids (furthest from my nose) tighten to the point that they're nearly closed, the inside of my nose gets "pins & needles;" and should I inhale through my mouth, my throat feels like I have ice sitting in it.

And as far as being inside, I have a pair of fleece gloves on top of the refrigerator so I can remove what I need from the fridge and freezer without getting "pins and needles" in my fingers or at least without getting it as bad as I would were they not protecting my fingers from direct contact with the cold. When I wash fruit or vegetables, I have to then run hot water over my fingers to end the "pins & needles" sensation from the the cold water I rinse the produce with. And of course I also have to immediately dry my hands after warming them with the hot water or else once they cool off, the dampness cools my hands to the point that they get "pins & needles" again. Juice from fruit running onto my fingers will cause it. Handling tons of greens while making Green Juice, an absolute must, will cause it. And usually when I get out of bed in the morning and walk into the living room to turn up the heat as we begin our day, my fingers feel it just from the cold air. I also can't drink anything cold or even slightly less than room temperature because such things cause my throat to feel as if something is stuck in the back of it.

I have lots of wool socks, a pair of down-filled mittens, a fleece neck warmer I can pull up over my face, and I have those little hand-&-glove warmers in my glove box and coat pockets, should I find myself in the cold with no heat source. You know. Should the car break down in the cold weather, I am not interested in the temporary loss of use of my hands or feet because of my chemo cold sensitivity!

Oddly, my hands also cramp for the first few days following treatment as a result of the Oxaliplatin. After the first few treatments, the cramping was happening quite frequently. I would open a jar of something or play my guitar or be playing with Legos with my boy, and my fingers would just cramp up until I kind of worked them back into a normal position again. My nurses that do my systemic treatments here at Cayuga Medical Center, said they would slow down the infusion from two hours to four hours. I suggested that perhaps they just couldn't get enough of me and were doing whatever it took to keep me there longer. However I could be mistaken...considering that lengthening the infusion made a huge difference and minimized the cramping compared to my previous treatments. Oh well...

On a good note, the sessions I recorded with the brilliant hynotherapist I've been working with have had a deeply positive impact on my state of mind while I experience the worst of the chemo side-effects. As I mentioned in the January 25th post, when the side-effects are at their worst, my mental attitude and sense of hope is at it's worst. So when the chemo already has me "behind the eight-ball" and then I find myself feeling angry or disappointed with another person, I sometimes go down a road where upset leads the way and gratitude for life has vanished. And we all know anger does not heal a thing. And if anything, it's food for disease. So, when I find myself feeling that way, I lay down, put on my headphones, and listen to one of the hypnotherapy sessions. They're amazingly powerful. I let go of my expectations of others and return to peacefulness and gratitude for my life. My coach tells me that her work with burn victims provided her the opportunity to observe how hypnotherapy retrained the mind's of her patients, much as I am doing for myself, and created a quicker return to a positive and hopeful attitude about their health and future. That combined with daily meditation has been a powerful source of wellness for me. I have much to be grateful for.

Treatment #5

On Wednesday February 8th I went in for my fifth systemic chemotherapy treatment. This time the anti-nausea pre-med was intravenous Emend and it was 100% effective. In the past, I have taken Emend in pill form over a 3-day period with a nausea-free effectiveness of about 90%. This time I was 100% nausea free all day Wednesday, Thursday and until 3PM on Friday. The nausea started at 3PM because that's when I was on my way to have the portable chemo pump unhooked from my port. Each time I've gone to get the pump unhooked, I've found myself miserably nauseous.

I have never been 100% nausea free while doing chemotherapy. I had no idea it as even possible. It's great to have a completely effective anti-nausea med. Now if I can just find an effective anti-feeling-poisoned med to deal with the rest of the side-effects I'll be in great shape!

I believe what had me feel nauseous on Friday afternoon was an anticipatory nausea I experience prior to the start of a treatment or prior the removal of the pump on the third day. I was prescribed Ativan to manage it. It reduces the anxiety so the nausea doesn't start. But unfortunately, once I opened the cupboard to take one, I forgot why I was in there (chemo-brain) and never took it. And once the nausea started, it stuck around for a while. However, it was relatively tolerable, so we did some vocal recordings on a song here at the house until about 10 PM when I decided to go to bed.

By 11 PM I started to experience abdominal pain. Inside my abdomen I felt a sharp pain and burning. It was a pain level of about four out of ten. Once it got to a six out of ten, I took a couple anti-acids. They didn't work and the pain increased to an eight out of ten. So in a last ditch effort, I took some Pepto in hopes of "putting the fire out." Well, within a minute I was bent over the toilet bowl while my body rejected every last bit of the stuff. At that point I called my oncologists office and got into communication with Dr. Bael, the doctor on call. He recommended the Emergency Room for bloodwork and pain relief, and my housemate gave me a ride. Within an hour of being at the hospital, I was on a bed receiving intravenous Dilaudid for the abdominal pain. Blood work was done and the only thing that stood out was my very high white blood cell count which was a result of the Neulasta shot.

The pain from the Neulasta has been brutal for the last four treatments. Yet during my latest meeting with Dr, Kemeney, she mentioned that my white blood cell counts have remained high and perhaps I didn't need the Neualasta shot and could instead go with Neuprogen. The nursing staff at CMC explained that Neuprogen was five shots over five days and perhaps I might prefer to simply do a half shot of the Neulasta (three milligrams instead of six). I went for the half shot and so far it's been a night and day difference. No need for narcotic pain killers to deal with the Neulasta. Instead I have just a little facial pain and some light soreness in my arms and thighs. What a relief.

This morning, I was seen by Dr. Bael. Since the bloodwork from the Emergency Room revealed nothing other than a high white blood cell count, and no liver or pancreas issues that could have caused the pain, Dr. Bael suggested the pain may have been spasming, in response to the chemotherapy. So as a precaution, he wrote me a prescription for Percocet should the pain return today or anytime following future chemotherapy treatments.

Other than having to stand in line in the Emergency Room doubled over over in pain, I'm happy about treatment I received. I felt cared for by the staff which makes a huge difference.

Saturday, February 4, 2012

Still No Pump Chemo

I went to Sloan Kettering to see Dr. Kemeny on Wednesday. About halfway there we took and wrong turn and took a ride I don't regret along the Hudson River. It was beautiful.

My CT scan came back negative. That was great news. However my bloodwork again revealed the Alkaline Phosphotase enzyme was again too high - not as high as before but still to high - so I was not eligible for a liver pump chemo infusion. I asked Dr. Kemeny what could be done and she said she would be willing to add the steroid Decadron to the saline and Heparin that solution going into the pump in lieu of chemo. She said the steroid often reduces the enzyme counts and the only real side-effect to be concerned about is a lack of sleep. I told her that considering the liver pump is what's providing me the best odds of no recurrence, a little lack of sleep is hardly an issue. I'd tolerate far more than that in order to be eligible for the pump chemo. The pump chemo combined with the systemic chemo raises the odds of no recurrence from 60-70% to 80-90%. I'll do whatever it takes.

Dr. Kemeny also mentioned the CT scan revealed what appeared to be inflammation in my intestine and she asked if I was experiencing abdominal oain, swelling, diarrhea, etc. I told her I have experienced none of the issues she asked about and she said the appearance of inflammation could very well have been a result of the contrast I drank and also had injected intravenously for the CT. I hope so. Symptoms of Colitis was one of the concerns she had. And given the option, I'll pass on that.

Each time I have a trip to NY scheduled one of my regular passing thoughts is that I can go by myself. Then within a few minutes I start laughing at the absurdity of such a thought and I make a call or two to my friends who are already on board to join me for the trip when needed. I am currently way too fatigued from the chemo treatments to drive the four hours each way, should I do it in one day or two. And this leads into my overall need to care for myself. It's amazing how much resistance that occurs in my thinking. From an early age I was impacted by the culture of the USA - to be independent of the help of others. That may not be very apparent considering I've reached out for the support of my friends and community, but the reality is that it has taken me a great deal of personal growth to be able to ask so directly for support. I'd be willing to live in seriously undesirable circumstances, but I won't have it for my little boy. He will always have a good life as long as I'm around to have any say about it.

And amazingly, I was at the Tompkins County Department of Social Services a couple of weeks ago and I was told my disability income was too high to receive much in the way of anything from them. Perhaps I might receive a few dollars for food each month. To which I responded, "So is DSS support essentially for people who are so down and out that there going to be on the street if they don't get help?" The answer, "Essentially, yes." I guess it's good the poorest of the poor have an agency specifically aimed toward their specific needs.

So caring for myself has been very humbling. Asking for support for starters. And also just resting instead of keeping up on my to-do list or even being social. It's taken a lot of letting go of how I believe a man & father should live and instead do what I've got to do to be as healthy as possible. This whole process - surgery, recovery, chemotherapy - it's all feels very demasculinizing. I'm sure I touched on this the first time I was diagnosed. Yet the thought still shows up today. Granted the experience of demasculinization is a cultural creation. It's not real like gravity or mortality, but it can feel very real and had it gone undistinguished by me, it would have the controls regarding my daily decisions. But instead I keep an eye out for it, notice when it's invaded my thinking, and quickly presence myself to the reality that after caring for my boy, caring for myself emotionally and physically as I undergo chemotherapy is of the highest priority. And, succumbing to the desire to not feel emasculinized isn't always a bad thing. It's just not very useful in my case right now.

And gratitude is another powerful place to stand. My father-in-law sometimes reminds me of the huge privilege it is that we live in a country where the needed necessary medical treatments are available to us. It is indeed something to be grateful for.

Wednesday, January 25, 2012

Wellness Barometer

Today was my fourth round of Folfox (systemic chemotherapy). By the time the treatment was nearing completion, the nausea was coming into effect. This is a new experience with this treatment. And fortunately, the nurses have me trying a new combination of anti-nausea medications, with the intention to reach 99% effectiveness. I look forward to that possibility. Oddly, at the moment, writing this post seems to be distracting me from the nausea.

What I've noticed with the last three systemic treatments is how the level of hopefulness, or more specifically the hopelessness I feel about my overall future and chances of long-term survival, are directly related to the side-effects I experience from the treatment. And at the moment, another side-effect I'm experiencing is my ability to think clearly. It took me three or four minutes to figure out how to write the first sentence of this paragraph. "Chemo-brain" is often the term used by my peers for the lack of clarity or forgetfulness which often results from systemic chemotherapy. When I feel my worst, usually Friday and Saturday, my thinking tends to go unchecked, or shall I say, less frequently checked by me the observer of my own thoughts. And when I do notice my thinking, I find it to be very negative and hopeless. It's only after the weekend, that I begin to return to feeling hopeful.

One of things I've been meditating on is going beyond acceptance of my "humanity" (those parts of my personality I would prefer to do without), and taking on the possibility of gratitude for it. I have very little experience with actually experiencing this way of being, perhaps only a few moments in my entire life, but I can see the light at the end of tunnel. I know it's available to me. And having to manage such intense hopelessness while I experience these side-effects, inspires me to let go of the need to constantly judge myself. Now more than ever.

So, I have begun looking at what structures I can put in place to proactively manage the sense of hopelessness that currently accompanies the side-effects of these systemic treatments. One that I have come up with so far is the incorporation of hypnotherapy and I've scheduled a session for this Friday with a practitioner I have already had two absolutely extraordinary sessions with. Our intention is to do the session while I'm in the midst of this mindset, a place where emotionally, "my edges" are sharpest; when patience is lacking and ultimately I am not present to gratitude. The session will be recorded, so I can listen to it when the side-effects are at their worst and impacting my attitude and beliefs.

Gratitude has become my mental/emotional/spiritual wellness barometer. When I am present to gratitude, I have the experience that "all is well" - all I wish for and all I don't. I experience love. When I am not present to gratitude, I am clear there is something for me to distinguish, perhaps let go of. I have so much to be grateful for. I love my life, just not some of current circumstances. I'm not thrilled with the cards I've been dealt, but I have the opportunity to play the hand, and that is a privilege. Much of my life brings me great joy. My family, my son & step-son, my friends & community, the capacity to coach, and my music & all who share it with me. I'm committed to putting into place whatever tools necessary to represence myself to that which matters to me most.

And at the moment, the health report is slight nausea, fatigue, feel spacey & unclear. Also, my right hand is cramping, causing my fingers to lock in place for a matter of seconds or slowly tighten and curl inward. I just got off the phone with Dr. Garbo's on-call staff and was informed this is often a result of the rate at which the Oxaliplatin (chemo) is being administered and can also show up as leg cramping which sometimes makes it difficult for individual to walk. I was also told that it may get worse before it gets better. My legs cramped up a little this evening, but nothing serious.

Time to call my friend who goes in for surgery tomorrow. She's having a malignant tumor removed. Then I will lay down and get some rest

Thursday, January 19, 2012


I saw this sign posted over a bar the other day. It made me think of...of me! I just may have found my new nickname.

Haha I love it!!!

Wednesday, January 18, 2012

The Show is On

So I talked to the fellas and everybody's in. We are going to perform this Friday January 20th from 7-10 PM at Costello's in Auburn.

I am SO excited. And Taylor, Theresa & Joe are an absolute joy to make music with. Plus Patty who owns the place makes us feel as at home as any bar owner can. So if you're free on Friday evening, come on down to Costello's on Aurelius Avenue in the Prison City and let us play a few tunes for you.

Tuesday, January 17, 2012

Alkaline Phosphatase

 I took a look at this page and realized it's been quite some time since I last posted anything. And I know that often leads to questions about my well-being. So, overall I am well. And the last couple of weeks have been quite hectic.

On Wednesday January 4th, I went to Sloan Kettering for a liver-pump chemo infusion. After my blood work was complete, Dr. Kemeny informed that me the count of a particular liver enzyme, Alkaline Phosphatase, was too high so I would not be receiving the treatment and instead I would receive the traditional systemic treatment in Ithaca on Wednesday January 11th. Before I even thought about how my friend and I just drove all the way to NY only to be told it wasn't necessary, my mind was locked on how I was going to have to call Jack and cancel the gig we had scheduled at O'Toole's for Friday January 13th.

Thus far, the Fridays following my systemic chemotherapy treatment have been very difficult. The side-effects have been nausea; feeling heavily poisoned (the closest thing I can relate it to is a bad whiskey hangover); bone pain in my face, back, hips, thighs and shoulders (very much like sever flu symptoms) as a result of the Neulasta shot; and extreme fatigue. Clearly not something to manage while performing.

And I was so looking forward to doing one of the things I love most. It was only in the car on the way back from NY that I started to think about how much driving we had done, all for naught. And there wasn't anything for me to be upset about. Dr. Kemeny made it clear to me from the beginning that she only wanted her staff to do the blood work that would determine whether I receive my pump chemo treatment. However, upon delivering this news to me, she suggested that from this point forward, I have the blood work done two days prior, by Dr. Garbo's staff in Ithaca, to avoid another unnecessary trip, which I very much appreciated.

In the meantime, I had been preparing for the boy and I to move-in temporarily with a different friend, while I continue to search for an apartment in Ithaca. The place we had been since May was great. And, this is a time I need to selfishly take care or myself, i.e., peace & quiet. Living in a household with one adult and three children, plus my own child, is hardly peaceful and quiet. And there's no reason it should be. Kids deserve to be excited passion-filed little beings, which is not conducive for a person on a seven-month chemotherapy regimen seeking peace and quiet! So, as soon as my pump-chemo was cancelled, I knew I was only a week away from another systemic treatment and had less than a week to pack and find some friends whose schedules allowed for them to help me move, since I still can't really lift much or exert myself a whole lot. Yet, three days later I was blessed with the help of some dear friends, and all of our things were moved for us. And we now live in a great space in a quiet little neighborhood which couldn't be better.

And while I was typing this blog entry, I received a call from Dr. Kemeny's office; my blood work shows my Alkaline Phosphatase count is still a bit too high so I'm ineligible for a liver-pump infusion on Wednesday and will again do systemic chemo treatment in place of it on Wednesday January 25th.

The bad news? I have to cancel our only other scheduled gig, which was at the Beach House in Lansing on January 27th. This just ain't working for me. I just texted one of the guys about doing a private performance somewhere between Ithaca and Auburn. Maybe even this Friday if possible. Music is an outlet that provides me SO much. It's something I absolutely wont do without. Yes, I play music with friends - dear friends - and I love it. But there's nothing like performing with a band of incredible musicians who've come to operate like a finely tuned machine. And then add the energy of a great crowd. It's a high that can't be created any other way. And like I said, it's something I absolutely wont do without.

Friday, January 6, 2012


This morning I bought a hot breakfast and a cup of coffee for a pregnant junkie with only two days to get out of her apartment. And she's just a kid. What the hell am I doing feeling sorry for myself?

I watched this video again this morning (click on the link below). It moves me to tears. Thank you Fran xoxo

The Light is always there for us.

Thursday, January 5, 2012


This morning a friend & I went to Manhattan for my second Liver Pump chemotherapy treatment. An hour after I had my blood drawn, I met with my doctor, Dr. Kemeny, and she informed me that certain liver enzyme numbers were too high and I would not receive a treatment today. Instead I will receive another systemic chemotherapy treatment on Wednesday January 11th. She then suggested that we schedule my blood work two days in advance in Ithaca, so I don't have to drive four hours to find out it isn't necessary. I agreed that it was a good idea....................................

This is a significant change, because upon our first visit, November 30, 2011, she was insistent that my blood work be done in-person, in the clinic, by the MSK staff. Today she changed her mind and I am relieved. For me, it was a lot of time, energy & money devoted to a trip that provided very little. Although, if nothing else, it provided Dr. Kemeny what she needed to approve my blood work to be done in Ithaca to keep this from happening again and I am grateful for that.

The most disappointing part is that I had to cancel my January 13th performance. If I'm receiving chemotherapy from January 11th-13th, there is no way I can do a gig on the 13th. The nausea & toxic feeling on the third day of treatment, as well as the day that follows (Friday & Saturday), are just brutal. Performing is out. Once my liver pump treatment has been completed and I am back on schedule, I will book another gig (hopefully for February).