Sunday, September 28, 2008

Benefit Concert for Bert Scholl & Family

Benefit Concert for Bert Scholl & Family

When: Friday, October 10th 8 PM
Where: Castaway's in Ithaca (near Boatyard Grill)
Why: Help the Scholl family through the last leg of 6 month chemotherapy regimen
Cost: $20 suggested donation for adults. Minors are welcome if accompanied by a parent - 12 & under free.

Musical Lineup
8 PM John Reilly band
9 PM Kevin Kinsella & Hank Roberts
10 PM Sim Redmond Band

For a poster for this event, click HERE

Friday, September 26, 2008

Quite A Blast

On Monday September 15th, I knew I was facing the start-up of what are scheduled to be my final 12 treatments of chemotherapy beginning on Wednesday September 17th. So, I emailed a good friend who owns a pretty decent size plot of land out in the country and a few guns and told him, "I think I need to buy a few boxes of shells and come up to your place and blow the living $#@% out of something that’s already dead or at least inorganic anyway. You still shoot food, don’t ya?" His reply made it clear that he did. And within a few hours he informed me that another friend had just contacted him and requested permission to bring an 1898 bolt action Krag Springfield Rifle up to the house the following day to fire a few rounds.

For some folks, maybe a weekend meditation retreat would have provided just what the doctor ordered. But it was a s clear as a bell to me I needed something a little different. And man it felt good to let out some of that steam. I have been 100% committed to being fully self-expressed throughout this entire process and I was clear that I was just a little pissed about the fact that six months of chemotherapy was the recommended treatment for a person in my shoes. Six stinking months of this stuff???

Yeah. I want to go shoot the living daylights out of something that won't matter much. I must confess the world now has one less 2 1/2 gallon buckets at it it's disposal. But I'm sure we'll all find our way through that one. Needless to say, Tuesday the 16th was quite a blast.

Wednesday, September 24, 2008

"Letters to the Prison City" Update

When I first let you know that Letters to the Prison City was released on I-Town Records, apparently the link was not complete which made it impossible to buy the dics via the website. Well I'm happy to tell you the link is now up and running.

Different Chemo Dream

In the past I have shared how chemotherapy gives me really lousy dreams - negative, often a struggle, feelings of defeat. Well last night I dreamt I was making a dessert topped with canned whipped cream when someone came to me and said, "No canned whipped cream. For a truly rich & delicious topping on your dessert you want to use heavy cream or ice cream." Then I was looking at some photos I took and someone pointed out how the right film can really create the crispness I'm looking for in a photo.

Not a big deal, but I thought I'd let you know that I actually woke up from a dream, in the midst of chemotherapy, feeling satisfied. That has not been a common experience for me and it was actually quite nice.

Tuesday, September 23, 2008

Chemotherapy So Far

Well, this weekend didn't turnout so well. The side-effects I experienced from the chemotherapy this week were a little more unpleasant than what I had experienced last Spring. I do have the flu symptoms like I did last Spring. However, I was able to make it to our 10-year olds soccer game on Saturday which was quite a treat.

What really has me stumped right now is simply that I am doing chemotherapy. Period. Not that I don't believe it's the proper path to take. It's just that when I had cancer in my body, chemo made sense. When I had serious pain due to the tumor, chemo made sense. However, it's a tough step to take emotionally, when I feel so damn good and I know there is no cancer in my body. And to lose my energy, my strength, my feel nauseous all as a result of the treatment? It's tough.

Once the tumor was gone and the cancer non-existent, a friend asked if I was still going to continue the blog. For me, I'm still heavy in treatment and sharing with you how it's going for me is as much my intention now as it was in the beginning. And honestly, at this moment, my response is even more clear to me now than it was two months ago when Dr. Cagir told me I was cancer-free. At this moment, I honestly can not imagine what it's going to be like for me to endure 6-months of this. Today is only the fifth day after my first chemo treatment and about six hours of this afternoon included a debilitating migraine headache, again preceded and
followed by nausea, flu symptoms and just about no appetite.

I have to keep reminding myself that I am cancer-free as a result of the treatments I have endured. And that staying strong and being open to the treatment and being tolerant of the experience will by all means put me in a better position to receive it. Yet, I would be lying to you if I were to say I was feeling anything other than dread, at this moment, at the thought of doing eleven more of these treatments, thus perpetuating this miserable feeling.

Yeah, "letting go" has been a way of being that has kept me looking cancer, death, pain, misery - whatever - everything it has been for the last 18 months - right in the eye with no intention of backing down. And right now, I look at the idea of letting go and all I want to do is hold on. At this moment, all I want to do is hold on to what has been so beautiful - felling strong and full of energy - feeling alive and not a second more of pain to endure. And instead I feel too sick and unable to do even the simple things.

So right now life does not occur like I am anywhere close to out of the dark. Right now I feel like I am neck deep with a difficult road ahead of me. I will find my strength. I don't question that. However, I am clear that I do not know what the journey ahead will look like, nor do I know what it will take for me to get through it and keep myself on top. At this point, I've got nothing but faith.

Chemotherapy can be quite taxing - especially on the immune system - and as a result I am extremely vulnerable to cold & flu. So, naturally we will insist that anyone who is not feeling 100% healthy or has been near anyone not feeling 100% healthy or has even thought about being near someone who is not feeling 100% healthy, to refrain from a visit to our home. You cards, calls and emails mean a great deal to us. As always, thank you for your incredible support. We love you.

Saturday, September 20, 2008

My First Chemotherapy Treatment is Complete

I began chemotherapy treatment on Wednesday. Wow. It was one heck of a wake up call. I slept throughout the entire treatment. On the ride home, about halfway home from the hospital, I could barely keep my eyes open so I parked the car on the side of the road and took a nap. Once I arrived home - sometime between 5:30 & 6 PM - I immediately laid down on the couch and slept straight through the night until 11 AM on Thursday.

On Thursday, a friend drove me to and from the clinic. I had no desire to repeat Wednesday's experience. Fortunately, Thursday's treatment didn't me hit very hard. Friday was no big deal. I drove to the clinic, had the 5-FU pump removed, and then drove into town and ran errands. It felt good to feel somewhat normal again.

This afternoon I will receive my Neulasta shot - a rather unpleasant subcutaneous shot that stings while it's being injected. It's purpose is to stimulate white blood cell growth and is known to cause pain in the hips and thighs since the hips and thighs create a significant amount of white blood cells. I'm so looking forward to it!

Friday, September 12, 2008

My Chemotherapy Tretament Has Been Scheduled

My chemotherapy treatment has been determined and is scheduled to begin on Wednesday September 17, 2008. Dr. A asked when I wanted to start chemo. I told him never. He smiled and I said, "How about as soon as possible. The sooner I start, the sooner it's over. Not to mention I want to be certain the cancer is gone for good."

The regimen will consist of twelve treatments administered every two weeks for a total of 6-months. 6-months is not what I was hoping for, but it's what the doctor recommends so that's the plan. The treatment is a 3-day process consisting of a 2-hour infusion for day one and a 2-hour infusion on day two. At the end of each day's treatment, I will be sent home with a pump directly connected to my port infusing 5-FU. On the third day I will go in to have the port removed and I will be done for another 11 days. On the fourth day, I will receive an at home subcutaneous shot called Neulasta to stimulate the production of blood cells lost as a result of the chemotherapy.

The treatment will be a slightly different cocktail than the last two because the previous cocktail caused neuropathy in my hands and forearms - the sensation can be permanent and we want to avoid that as a potential outcome. Instead I should expect some nausea and serious lethargy. When it comes to the side effects, I continue to remind myself that as a result of following Gerson Therapy with chemotherapy & radiation, there is no trace of cancer in my body or the tissue that was surgically removed. And that kind of result - at least in the experience of my surgeon and oncologist - is unheard of. That combined with the beautiful faces of my wife and children is likely all the encouragement I will need.

Thursday, September 11, 2008

I Consider Myself Blessed

A few folks have asked how it's going with the ostomy. It's going surprisingly well. The care is pretty basic and doesn't require a lot of time. One of the questions I get about the pouch is what kind of maintenance is required. It's not much different than it was before the surgery. I discard the pouch about once a day and that's that. And no, you will likely never find me talking to someone while the pouch is in need of discarding. I don't stroll around town or at parties while the pouch is in need of attention. The pouch is actually completely empty and attached to abdomen throughout the day - more like a form of insurance, should I be surprised at some point in the day. But then I just make it to a restroom like anyone else would, do my thing, and go back to what I'm doing.

The only additional maintenance that's required is the weekly replacement of the wafer. The wafer is essentially a wax ring that adheres to my abdomen over the stoma. Once a week with the use use of a little adhesive remover, I peel off the wafer, clean off any remaining adhesive, put on a new wafer, attach a new pouch and I'm done. All that's left to do for the rest of the week is discard the pouch about once a day and that's it.

When I first realized I was going to have an ostomy, I had visions of the pouch constantly filling up while grocery shopping or visiting friends or while I'm at work in the midst of a long meeting. That's actually the exact opposite of what I experience. As I've said before, the battle is really all in my head. Maybe someday I'll lift my arms over my head and the pouch will be revealed and someone will see it and ask what it is. Or maybe they won't and I'll wonder if they noticed and what they're thinking. Hardly debilitating and only a problem if I make it one. Oh. And the only other change in my life is that I will be avoiding contact sports. I certainly don't want to take a direct hit to the stoma. No more than you would want to take a direct hit to the...well, I'm sure you can fill in the blank.

What it really comes down to is the following. This morning while I was getting dressed, Beau looked up at me, saw the pouch attached to my side and said, "Bah dat?" - his form of saying "What's that?" I looked at him and said, "This is my pouch. I was sick so my doctor put it on me to keep me alive. And now I'm all better and I'm going to live a long life with you kiddo." Tears started welling up in my eyes and I kissed him on his soft little cheek and told him I loved him. Really, if all I have to do to stay alive and watch him grow up is walk around with an empty pouch on my side, I consider myself beyond lucky. I consider myself blessed. It is good to be alive. That's all I can really say. It's good to be alive.

Monday, September 8, 2008

giving thanks...

hello blogworld! daniela here...for this first monday entry, i first wish to thank a large handful of people who made this whole journey for the past 18 months a possibility, and a successful one, at that. it has taken the help of so many people to make this path a feasable one...i will apologize in advance if i have forgotten anyone...this journey is the sum of the efforts of many,many beings...some visible, some i'm certain of the spirit world, and others belonging to the realm of the Divine...with the lines between all three realms being fuzzy, as many of you we saw on a weekly basis clearly have hidden wings...

fran & my dad: for your limitless love, kindness, empathy & support. you have been at cause for the greatly reduced stress on all of us, especially for the kiddos. the additional miracles bestowed upon us by many others would not have had the space to show up in, had it not been for your ability to deeply empathize with us & to then step into action... because our income went from "ok" to a few dollars above "zilch", we were able to stay in our home. may your profound generosity be returned to you both in infinite ways...

bert's mom & step-dad: for faith in a tough path...for weekly journeys to b-dale..for financially making the benefit-miracle happen, even with the risk of the miracle possibly not happening...(even though it did!!!)...for your caring, sweetness...for your help with carrots, greens, washing, drying, rolling...(is it coming back to you now???xoxox)...for your infinite love, your care, and help...for a dishwasher!!!! for a food processor!!!! you made our lives easier...for the airy fairy swing, which provided beau fun while i made more juices!!! you are loved & deeply appreciated...

little peanut: for rolling with a whole heck-of-a-lot, with smiles, hugs, and sweetness. i love you sooooo much...

viv & kevin: for making it possible to have live in help when we needed it, right after bert returned from mexico. for your words of encouragement, for your late night talks with bert when he was the mad-insomniac (i could always tell when he'd talked to you because his spirits were uplifted), and for all the hassle & inconvenience that goes along with schlepping yourselves all across the country to come see us, multiple times...thankl you for getting 'in our world' on so many occasions, and really making a difference...xoxo

kiff: for all that goes along with making trips out here happen...for being the most amazing brother he could ever are so loved...

buck & juliana: for your faith, support, and are both 2 amazing people, and we are so blessed by having you in our lives...

sheila: for limitless motherly love, support, and sweetness...

david mcilroy: for help when we desperately needed it...thank you to you & julie...for your support even though this path seemed nuts!!

ingrid & erich hess: for your assistance when we needed it, and your deep love and prayers.

manfred odendahl: for your love & gifts which made a difference

steve & adrienne hopkins: for all of your positive support, encouragement, and generosity

chris stadlemair: for being an extraordinary human being. going to mexico and helping to save my sweeties life. thank you will never quite cut it...

jackie gartenmann: for tons of laughter at times when it felt like the boat was sinkin', fast!!! for one juice after another...for living with us & still liking us afterwards!!

kate lunde: for being nothing short of a bona fide got us through one of the hardest months during this whole journey. forever grateful to you...

maryam: for your earnest efforts and huge heart

meghan vanloon: for pulling bert through some tremendously painful moments. you were a lifesaver.

neil weinberg: for donating your lunchtime to come out to B-dale & help bert with pain management

sally ramirez-warren: for your Divine love & generosity...for your angelic voice....your radiant smile...bless you, sally

tim smith: for being a beacon of light when we came upon several crossroads...immense gratitude to you...for recommending paul bruntion's, the wisdom of the overself...for helping to make sense of it all...blessings to you...

michelle newhart: wow...hard to figure out where to begin...first, for being the cause for the success our made that all happen...for your tremendous generosity of time every monday & thursday night, coming out here to make juices, prep veggies, and clean...for your love, friendship, and inner radiance. you are simply one of the most amazing people i have ever had the honor of knowing...thank you, michelle.

sue cosentini: for your wit, humor, love & generosity...for driving out here at 2am to keep the generator going...for being an amazing friend...for an awesome garage sale!!!! you are one unstoppable woman!!!

anke wessels: for your enthusiastic support, generosity, and authentic tears of joy when we met our goal at the benefit.

tess lawlor: for being the genuine calm in the middle of a category 5 hurricane, those first days bert came home from mexico. i'll never forget looking you in the eyes, and all you saw was my sheer terror at trying to figure out how to turn our home into a gerson factory. you joyfully and calmly created a miracle in our home...for creating the most delicious alkaline carrot of the gods. for your bags of alkaline cookies...for your all out deliciousness!!!! xoxo

john suter: for shopping every saturday for us. for donating valuable chunks of every time every weekend. for managing huge produce orders, and always having a smile at delivery time, and encouraging words. for your generous 'discounts' at reimbursement were such a huge contribution...

patty & jerry; for your dependability and many, many hours of time spent here at the house washing carrots, greens and playing with beau. you are an angel...for helping plan this next benefit!! jerry, for all your driving to & from sayre...and for all your good "VIBES"...xoxoxo you are both huge heros to us.

sparx & jen: for support, love, and friendship. your talks with bert really pulled him thru some tough, dark moments. for your generous contributions...for our kitchen table...for bert's recliner....multiple rides to sayre, coming from are both just amazing...

ann harch: for generosity, support, supplements, and love...for hour long talks about health, reiki, macro, and oodles of laughter. you are such a kind spirit....a blessing to be friends with you.

carol crossley: for your belief in our path, for your generosity, and love, which could be felt very strongly here, despite an ocean between us!!! for EFT!!!!!!!!!! we love you...

don blazely: for such thoughtfulness regarding our family, and the CCR tribute show. i'll never forget the day you called outta were truly an answer to my prayers. we are deeply grateful to you.

emily hunter & the sweet land farm in t-burg: for long drives from tburg to bdale with oodles of the most gorgeous produce EVER, you were lifesavers, and truly generous...thank you so much...

dustin & michelle stuhr: for being such a dear soul to bert...for the americana jubiliee...for caring so lovingly for leo...thank you thank you thank you

jen bubel: for a new friendship that i know will be forever...for your love of our family, and your sweetness...for your generosity...for putting huge smiles on our children's faces...we love you deeply.

cuqui: for being my anam cara

ion birch: for patiently, and generously helping me on a 'greens' day... xoxo

carl, our neighbor & mailman: for snow shoveling many times before i was up at 5:30...many, many thanks!!!

the kingsleys: for your generous skill & contribution to the benefit!!!

kristin campagnola & jodi peters: for all your assistance, after i left IMS....for hosting the benefit...for never ending support and kindness...

andrea riddle: for deep insight, empathy & compassion...thank you...

tony pain: for making something unobtainable become a workable possibility...thank you...

marne & ben: for limitless smiles, check-ins, and being our compost godsends!!! for picking up 5 gallons of compost every day for over a year.....bless you both!!

marne & ira: for being a champion for bert...for bringing avi & michael into our lives...for your faith, trust, and love, we are forever grateful

mitch bobrow: for your wisdom & grace...thank you...

marli stahler: for being Divine sunshine on days that, at times, felt as if no rays could possibly penetrate thru thick clouds...

adrienne mcnair: for practically living with us at one point, when we needed so much help. for your beautiful smile, cheerfulness, and kindness. your multiple rides to were a lifesaver. thank you....

sigrid kulkowitz: for your fantastic music cd's for bert! for just showing up when we needed it the most. for giving us the opportunity to really get to know & love you! we miss you!!!

jenna robarge: an answer to our prayers...showing up daily, even at 6:30 am to wash chard & beet greens...scrub carrots...learn to make juices, all at a time when you were getting ready to move across the country!!! we will never forget such extraordinary generosity....we miss you, jenna....

deborah simms & george: for being angels who also showed up at a time when extra help was needed!!! thank you for loving beau so sweetly. thank you for driving out to the hospital when i broke my toe!! thank you for cleaning out the shed!!! bless you both....

chad novelli & jonathan panzer: your generosity & kindness via the many trips to and from sayre...

kati andressen: for your great sense of humor!! for your angelic voice that hypnotized beau...for washing oodles of greens & carrots...for helping us thru the "broken toe days"...we love you!

mary anderssen: for being a real-deal angel...for helping with maxi-poo....for opening your home to our little are all a second family to him. we are in deep gratitude to you & rich. namaste...

ally burch: for your grounded energy, that was contagious. for all your love, and belief in what we were doing...xoxoxo

adrian lucas: for having such peaceful, calming energy...for drawing bert's blood monthly, and schlepping it over to the lab for analysis

christian prysgaki: for helping bert with massage, especially when he was in terrible pain.

kevin kinsella: for being nothing short of true 'family' to bert...

rob & kelli: also for being true family to bert, and for kelli's delicious dal, and for being extraordinary friends

mr & mrs verity: for finding a fantastic sandbox for beau to play in, which gave him hours of enjoyment!! thank you...

lindy cummings: for your sweetness, grace, and peacefulness in our home

marion deats (rain): for being front & center of the cheering team!! for your empathy, thoughtfulness and kindness...we thank you so much...xoxo

catherine martinez: for your wisdom, humor, and genuine friendship...i love you

jane schantz: for your peaceful centeredness, your knowledge of homeopathy, your support in sayre, and friendship, i love you! thank you...

karen schantz: for just showing up when help was sooo needed,and for giving beau fun, love & smiles!

avi baumgold: for all your sweetness with were a miracle at a much needed time...

michael margolin: for your shopping, your generosity, and enthusiasm...thank you so much...

sim redmond band, pasa fino, hank roberts: thank you for contributing your time, and artistic gifts at our benefit. you helped make that massive miracle possible...

john ryan : for taking on the huge task of getting a stage to the scene of our benefit...thank you so much!

wegmans: for bagging up our groceries (5 bags worth!!) , in advance, on wednesdays...for being so helpful thru very tough times...thank you

greenstar: providing us with a juicer while we awaited the arrival of the Norwalk juicer...for getting granny smiths when no one else could!!!

charlotte gerson & dr cervantez: for carrying on a legacy...for saving robert's life...may you be blessed...

dr cagir, dr allerton & nan walsh: for your dedication, care, and skill...for saving robert's life...may you all be blessed...

the following people i thank because you all helped with contributions at a time when it was looking terribly helped without hesitation, and very generously...may kindness return to you as well...

susan scott
mario cerame

karen maslinak

laurie smith

larry ulfik

ed smith

phil fergueson

pat & julie walsh

rick emmanuel:
for support, empathy, and thingking of our kiddos...xoxox

linda stout: generous & supportive reporting...namaste...'s amazing that having cancer does not have to mean "going down a road alone" . we were, and still are, blessed beyond my wildest dreams to be supported by this whole global community...ask and ye shall abundance.

in deep gratitude,

Friday, September 5, 2008

A Good CT Scan - Abscess Gone

On Thursday September 4th, I went in for a CT Scan and was happily informed that there is no abscess. In other words, the fluid removed from the rear incision area on August 8th did not return and I am free and clear with no need to see Dr. Cagir (my surgeon) for another three months. Whi-hew!!! [Nothing personal, Doc, but that's damn good news.]

However...I do have some discoloration around and tenderness on the stoma [the surgical opening visible on my abdomen] and I had a fever on Tuesday night. Dr. Cagir took a look at the stoma. There is no irritation on the skin surrounding the stoma. He also checked the stoma for hernia and found nothing. He completed the meeting saying he could not tell what was causing the irritation but also explained that it's not his arena and made sure I shared it with Dr. Allerton (my chemo doctor) who he knew I was scheduled to see. So, when I met with Dr. Allerton, he took a look at the stoma and reviewed my blood work. White blood cell counts were good meaning no serious infection, so he put me on two antibiotics - Flagyl & Avelox and made it clear that I am to contact him immediately should I experience any additional pain, swelling, puss [yuck], fever, etc. I also self-prescribed Ibuprofen to reduce the swelling and thus reduce the tenderness. It's definitely making a difference.

It was an interesting experience at the hospital. Dr. Allerton missed my 10 AM appointment because one of his patients had an emergency as we were waiting to see him. So, I we went to my 11 AM appointment with Dr. Cagir and returned at 12:25 PM to see Dr. Allerton. He was not scheduled to return from his meeting for another 35 minutes which pushed our meeting time back to 1 PM. At one we were called in to the exam room. At 1:25 PM, I asked if he knew we were there. At 1:40 PM he was paged and it was reported that he was in the ER with one of his patients. I found myself frustrated that we had waited a total of 1 1/2 hours to see him and still we waited. Then I reminded myself that if I had a dangerous reaction to my chemotherapy treatment that put me in the ER, I would want him there monitoring my vitals making sure I had whatever I needed. A bad reaction to chemo can be a pretty scary situation from what I understand.

And at the same time, I find it hard to be compassionate and patient - waiting, waiting, waiting - while Daniela & I are doing everything we can to keep our 21-month old occupied or better yet, to keep him from exploding out of sheer boredom as he climbs the walls of the tiny exam room. Because when he starts losing it as a result of being in the hospital for hours longer than any of us find tolerable, we soon have to start monitoring our own patience levels with one another before the two of us start pulling our hair out because we had no intention of being there this long and now we are wondering if we'll be able to pick up the 10-year old from school on time. Not to mention how fortunate we were that a friend/neighbor agreed to let our dog out for us while we were at my appointments.

So, there we are on the floor of the exam room playing with Matchbox cars. And when that got old, we let Beau sort the various exam room materials and tools. We try to avoid that, but by this point it was either their materials & supplies all over the floor or a 21-month old tyrant whom we adore screaming for whatever it is that isn't available to him at the moment. And soon that got old, so I got online on the exam room computer, discovered YouTube to be a blocked site, but then got lucky opening Google Video and was able to access a non-Youtube video link to the Muppets doing Mahna-Mahna (one of our all time favorites) for which I soon realized there was no speakers. So, I sang along as best I could, then searched and eventually landed on Bob the Builder - of course with no sound. But as soon as I clicked on "play," Beau immediately exclaimed, "Bob!" and we knew we had secured a few more minutes of relative peacefulness.

After my appointment, Dr. Allerton apologized for the second time and again I let him know how much I would have wanted him by my side if I was having an emergency-room-scale reaction to my chemotherapy. In retrospect, I feel like it was a good opportunity to let go of how I expect life should be. It really does make things easier to go through, but my goodness, life is not exactly short of these opportunities and I can hardly consider myself an 'A' student in that arena. But all in all, I think Daniela and I did fairly well. I'll see Dr. Allerton next week for a check up assuming that between now and then, the stoma goes back to normal.