Coming to Life

I have just begun my seventh chemotherapy treatment...I think. Guthrie Clinic provides it's patients guest access to their wireless internet system, which makes it even easier to pass the time during these chemo infusions.

It's amazing how each week after I receive an infusion and return home to rest and trudge through the side-effects, watching movies, football, basketball, hockey - what ever's on - I will judge myself because I'm not working or taking care of the kids or doing things that need to be done around the house. Then when my mind is clear and I start to see through the "fog," I recognize that my feeling sick - too sick to be up and about and too sick to read because I can't focus - is expected. And for me to do only what I can tolerate is equally expected. But the chemotherapy affects my memory and I actually forget that my being in no condition to do much of anything is expected or at least understood and the self judgment arises.

It seems to be just another version of my resistance to rely on Daniela for so much - care of the kids, the home, etc., etc. Yet these emotional struggles and something I am quite accustomed to ever since my treatment began. But it's amazing how the forgetfulness I experience from chemo keeps the cycle of judgment in motion - every other week, the thoughts repeat themselves. I must continually remind myself that I am in treatment, because I literally forget at times. Doing the same thing over and over - treatment after treatment - creates a familiarity with the side-effects and they start to feel like the norm. My mind begins to believe that my experience is who I am. And that does not leave me feeling good about myself.

So I am grateful to have an extraordinary wife, who gently reminds me - often with a bit of a laugh - that all of this is temporary. And as she tells me this, she knows that the next week I will feel great about my life. And that in the week to follow, I will once again be revisited thoughts of inadequacy.

Chemotherapy is a peculiar drug. Accepting that I forget over and over week by week isn't an easy thing because it's not like what I've just shared with you is obvious to those who come and visit or even to myself at times. It's not that I will forget what I was doing or why you are visiting or where we are going. It's a far more subtle experience that shows up in my thoughts during the repetitive and mundane moments throughout the day. As I lay on the couch or in the recliner feeling achey and out of focus, watching basketball or a movie or as I prepare myself something to eat and move about slowly because of the flu-like symptoms I experience, I start to: "think this is my life" - completely forgetting that not only is this not my life, but it's scheduled to be over in March of 2009.

And oddly, it's not disappointment I feel when I realize that I am caught up in the murky fog of chemo side-effects. I actually feel relieved when I realize I am actually doing exactly what I need to do and that it is in fact only temporary. March will come and with that Spring. And as the sweet smell of blossoms and sprouting green plant-life begin to take over the odorless browns and greys of winter, I too will come to life. Chemo will be done and it will be time to experience the energy of a healthy life - one that was so familiar to me only two years prior. I am delighted and even more so for an incredible summer.

If you celebrate Christmas,

Have a very Merry Christmas.

If you don't, have a beautiful day anyway!

a letter to santa...

dear santa,


daniela here...

i know it has been awhile since I have written. ok...years, actually...i know you have much to do this time of year, so I thank you in advance for taking the time to read my letter.

you probably get a lot of mail now, so i'll give you the penny version recap & then my request:

it's been almost 2 years now...bert has had cancer, survived cancer, and is undergoing post-op treatment for cancer. this will go on till april. as you know, we had a baby, who is now 2, and an 11 year old. honestly, the last couple of years have been a bit hard, especially for bert. always in the background, like an old 'frenemy', lingered the curiosity, "am i going to live?". with cancer, there is little escaping it. throw into the mix the inability to walk much or move more than from one room to another (in significant pain) for a whole year, it added up to quite a whopper of a time...

our income went from pretty workable to $1300/month. it had our extended family make significant financial sacrifices in their lives in order for us to remain in our home by supporting our rent & heat (we just missed the cutoff for gov't $$ assistance), and then we were just able to pay for our other bills and buy food for the family out of our monthly income. the added kindness of friends, loved ones, and total strangers helped lighten the burden from time to time.

there was one point not long ago that none of us even liked one another in this household, when bert began his post-op chemo. it was like all the love, laughter & joy we had generated through all the crap just got sucked out of existence, and we were left simmering and stewing...eyeing one another with judgment & criticism...of course, we brought it right back around to Love, laughter & playfulness, but it really took something to do so...it was like a miserable delayed reaction to all the difficulties this whole cancer journey had on each of us individually and in different ways...the impact of cancer on a family as a whole is just enormous.

so, the flip side of this coin was the deepened appreciation & gratitude we have for one another. it's a sacred and precious thing to partner up with someone you love and cherish for the brief & fleeting time we are here together on this planet. we are honoring that sacredness. we also can see how intimately connected to our life purpose this cancer journey has been. that is beginning to reveal itself to us, and is very exciting (more on that later...) !!

so, here are my christmas wishes for this year ( and i do understand fully that i am ultimately responsible for creating my life...i also gratefully accept any help from outside forces!!)

1. health & happiness for our global family, all around the planet.
2. independent $ ease, when we eventually shift from this chapter of our lives into the start of the next.
3. an extraordinary year with our new president
4. no more cancer for bert... e-v-e-r!!!!!!!!!

well, that's it, santa. that's all. if i can only have one, i'll take number 4, hands down. it might be selfish of me to pick that one over global wellness, but right in this very moment, all i want is for bert to just be done with the varying forms of suffering he has endured. like, he got every form possible, i think....can it just be done, soon??? i love him so dearly, that i'm pleading his case to be over soon....so, whatever pull you have to make this happen, i'd be ever grateful...

by the way, i'm Cc-ing God, Buddha, and Papa Smurf on this...i'm leaving no stone unturned...

love,
daniela

ps: please leave something x-tra nice for bert's doctors and the nurses who take such amazing care of him during chemo. they should be sainted.

What a Nice Surprise!

I just took a look over to the left side of this blog page and saw some new faces in the Followers section - what a treat! Thanks for putting yourselves up there. Not only is it a gift to see your smiling faces, but it also means a lot to me to read about you and know who you are. Combined with the comments, it creates a little more connectedness between us all.

Speaking of connectedness, yesterday, I just learned of an organization called The Colon Club. Here's a little blurb from their website:

The Colon Club was founded in 2003 by Molly McMaster, a colon cancer survivor who was diagnosed on her 23rd birthday, and Hannah Vogler, whose cousin and Molly's friend, Amanda Sherwood Roberts, died of the disease at the age of 27. Our main goal is to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways. Our wishes are for people to have "colon talk" in their everyday lives, to know the risk factors and symptoms, and to get screened when it is appropriate for them.

As you may have probably imagined, I have become a member and look forward to learning about the experiences of others in hopes that it will provide me some insight and freedom regarding what's ahead. And naturally, I will share from my own experience when I find reason. I'm really quite happy to find this organization because there goal is to get the word out and make people aware. Nobody needs to go through what I have gone through when a relatively simple exam could allow someone to avoid it all. Thanks Colon Club! Keep up the good work!


I also recently took a look at a website called Raw For Thirty Days as a result of a conversation I had with a gal from the T. Colin Campbell Foundation. She said she met two different people who cured themselves of diabetes by eating raw for thirty days and went on to share the healing benefits it provided folks with other degenerative diseases. I can't imagine it being easy to eat raw for 30 days, but if it provides the benefits the organization boasts of...30 days ain't that long! There is a video on Rawfor30Days.com about six people who take on eating raw for 30 days and their honesty about the diet in the beginning is just hysterical...and beautiful to tell you the truth. And the results they speak of are phenomenal.

Safe & Sound

I made it to and from Sayre, PA yesterday. It was quite a drive and one I hope to not have to make again under those conditions. Glad to be home safe and sound.

Slow Travel (or Maybe Snow Travel)

Well, it turns out I am feeling all right today and I felt pretty darn good yesterday. It gave me a chance to get some things done around the house which is always a pleasure in my world. My next concern is to get down to Sayre, PA this morning (one hour drive each way) to get my 5-FU pump removed (a 15 minute process!). Why is that a concern for me? The forecast calls for an inch of snow per hour today with a total of 8 - 14 inches in total. Well, I'm about to step out the door and get a jump on the drive so I can travel nice and slowly.

Today's Infusion

I am currently in the process of receiving my day two infusion of my sixth chemotherapy treatment. There was a little nausea yesterday - not fun. But I stayed strong and didn't request the anti-nausea IV meds. The nausea wasn't too bad and the meds for it just knock me out cold. I'd rather be conscious and a little uncomfortable than drugged and sleeping deliriously. At least for now. Hopefully it won't get too tough during the next six treatments.

The other side effects I have recently begun to experience are headaches. Yeah, I had the migraines last week, but yesterday when I got home I had a lingering headache. It wasn't really painful as much as it was just...there. Not really bad, but just enough to be annoying. And all last week when I didn't have a migraine, I still had lingering headache pain that lasted most of the week. It's oe of the side effects of my chemo cocktail. I took a pain reliever and it helped. Something I'd rather not do- take more pills - but let's be honest. I experience so many side effects, it's important to me to get relief on a regular basis.

At the moment I'm receiving my pre-meds - they're preventative meds. And as a result I'm feeling a little better than I was this morning and yesterday. I hope it lasts.

Oh, the two gals in the photo up above are two of the RNs in Hemotology Department where I receive my infusions. Sabrina and Marianne - they're great!

The Joys of Chemically Induced Side Effects

This latest chemo treatment - or should I say the latest side effects - really took me by surprise. The weekend was pretty standard. I had my chemo infusions on Wed/Thurs/Fri, then spent Saturday and Sunday riding out the lethargy, flu-like symptoms and the feeling of being poisoned. Nothing terrible or shocking. Pretty routine.

But Monday and Wednesday - they were gems! On both days I had super-intense migraines within the first couple hours of being awake. Normally, if I take two Aleve and go to sleep for an hour, I will wake up with a numbness where the headache was, but no migraine pain. However, on Monday & Wednesday both of these migraines were only about 80% gone following the Aleve and the nap. I was shocked. Fortunately, a couple Extra-Strength Tylenol took away most of the remaining pain. But I do have to say I was just amazed by the intensity of the pain.

Once the second migraine hit on Wednesday, Daniela called my chemo doctor and they called in a script for migraine medicine for me. Part of me is actually confronted by is the idea of putting additional chemicals into my body - to counter the effects of previously administered chemicals. Chemically induced side effects being treated with more chemicals? I'm clear this is a very common approach in allopathy aka Western Medicine: "Here are your pills and here are the pills to deal with side effects of those other pills. That may be how western is medicine done, but it doesn't mean I like it. And I have to ask myself, "What will the side effects of these latest drugs be and how will I deal with them?" Hopefully the side effects will be minimal.

Yes, it will all eventually come to an end at the end of March when the chemotherapy regimen is complete, which is what I keep in mind: the ultimate goal. And I will without a doubt cleanse the living daylights out of my body once this chemotherapy regimen is complete. Carrot juice & coffee enemas? Maybe. I'll know what's next when I get there. But one way or another I will be cleansing my system in the Spring and getting these toxic chemicals the heck on out of my system!

More Than You Know

I just finished my 5th chemotherapy treatment so it's likely I may lay low for a while and wait to write until I am feeling better. Due to that strong possibility, I wanted to address the difference it makes for me when you leave your wonderful acknowledgments. A couple recently posted have really made my day.

So, I thought it important to share with you that your acknowledgment of what I am up to and how I have gone about it are part of what has me take on my diagnosis the way I have. Your kind and thoughtful words inspire me to stay strong and maintain a perspective that serves me best. Your honesty and generosity helps keep me focused on the ability each one of has to choose an empowering context to live our lives moment by moment - no matter what the situation. I think that's one beautiful thing about being human.

So thank you for "putting yourself out there" and posting your comments. It's likely you provide me more than you know.

A New Possibility

I had a great appointment with my Surgeon, Dr. Cagir (that's him on the left), his Nurse Practitioner, Nan Walsh as well the hospitals ostomy Nurse. Dr. Cagir was pulled into emergency surgery 10 minutes before my appointment, so I met with Nan and Sue. Nan said my body is healed from the surgery and responding beautifully. That being said, my second concern was the possibility of being able to irrigate on a daily basis.

[Reminder: to irrigate is to take a warm water enema every 24 - 48 hours which flushes out the large intestine thus allowing the individual to go without a pouch [sweet!] and instead simply wear a large bandage.]

Nan did request that I speak to Cagir to confirm that irrigation is a possibility, yet she did read the surgery report which stated that I do have enough remaining large intestine to be a candidate for the possibility to irrigate. Yes, only the possibility. It can take one to two years of irrigation on a daily basis to train the large intestine to void once every 24 - 48 hours. And it doesn't stop there. I will then have to irrigate once a day for an hour in order to keep the large intestine trained. And I am fully committed to taking it on.

Sue then followed up with a visual of the necessary equipment used to irrigate and showed me how long and exactly how the process works. Very simple and very similar to the coffee enemas I did while on Gerson Therapy.

Considering I am a young man with lots of life to look forward to, a one to two year wait for the desired results, is a drop in the bucket if daily irrigation will provide me the freedom from wearing a pouch on a daily basis. Hell, I'd even wear a pouch for years if I had a damn near guarantee that it would stay empty until the next morning. And, of course, the large bandage would be ideal.

After my meeting with Nan and Sue, I caught Dr. Cagir on the way out of my appointment (and gave him a big hug - love the guy) and he said I will need to wait until 14-days after chemotherapy is over (in March of aught-9) before initiating daily irrigation. Regular chemotherapy treatments apparently causes consistent irregularity of the large intestine and irrigating would therefore be a waste of time.

He also thanked me for giving him a copy of my Letters to the Prison City CD and suggested I call it Prisons of Cagir. He's a nut. Today's meeting was great. I am very pleased with my new possibility.

I'm B-a-a-a-c-k!

I thought I'd post a couple pictures to show that I'm no longer a bean pole. Man, I sure was skinny!!!

Letting Go...Ad Nauseum

Lately I have found myself imagining what life will be like once I no longer have an ostomy. Then I remind myself that based on current medical science, there will be no day that I no longer have an ostomy. I'm amazed that I still find lurking in the back of my mind, thoughts about this thing being temporary.

It has crossed my mind that I may still view it as temporary because I still have some things to learn about, i.e., irrigation, which I will discuss with Dr. Cagir and an Ostomy Nurse on December 2nd. I have a feeling that irrigation may not provide me with the option of simply wearing a "bandage" over the opening for the remainder, which is why people irrigate (from what I read). However, I am still very much interested in the possibility of irrigation in hopes that it will at least, well...how do I spare you the details...reduce the amount of maintenance required on any given day. I can't imagine how it wouldn't provide me such a convenience and I'm going to hold out on any test runs until after my meeting on December 2nd.

I guess what's there for me right now is that I am not "complete" with the whole thing. I have yet to let go of how life "used to be." I know I will. Be disappointed about what can't be changed gets pretty old and pretty boring pretty fast. I'm not really interested in that approach to life. And right now, I am definitely still hanging on trying to figure out who to be mad at. Kind of silly and quite real at the moment.

Letter to the Editor

I sent a letter to the editor of Ode Magazine, expressing my appreciation for the article they did on Dr. Servan-Schreiber 's book Anticancer: A New Way of Life. And my letter made it into the December issue.

Click here if you would like to read it.

Note: Once you get to the digital issue, drag the scroll bar on the bottom to the pages 12/13. And there is a zoom option on top which makes the article much easier to read.

Voices of Survivors

Voices of Survivors is a website created by Lynn Lane - a survivor of prostate cancer. Lynn is an online friend I made after I stumbled upon his cancer blog one day while perusing the web for the cancer blogs of others.

Voices of Survivors is in the beginning stages and exists to give voice to those who have survived cancer. Each short video is direct, concise & simple, yet exhibits the power of something uniquely beautiful: the voice of a survivor. I know very little about the project, but I love what I have seen so far.

I only received the link from Lynn moments ago and had to share it with you as soon as I saw it. It quickly triggered a thought for me. Or I guess I should say a question. Inside the context of cancer, what is a survivor?

For me, a survivor is someone who has found the capacity to live a life they love - empowered - as fully as they are able - while they endure their journey with cancer. A survivor may die from their disease, or from something else for that matter, but they are a survivor nonetheless because they did not succumb to the fear, the anger or the hopelessness that can so easily consume a person unwilling to accept the road that lies before them. And for those who have succumb to the darkness that lurks about the minds of those who have been diagnosed with cancer, I acknowledge each of them simply for having to hear the words, "You have cancer."

There is indeed something to be said for those who beat cancer and live for many years to follow. But for me, a survivor is someone who chooses to be alive as they face the possibility of death. Some will live. Some will die. But those who choose life - even while they are dying - to me - are by all means Survivors.

Do you agree? Disagree? How do you define a Survivor? I'd love to hear what you think! Click here and let us know.

If you haven't checked out the website yet, click on the link above. Again, the sight is still in the early stages, but it's definitely worth checking out.

Better Off Bald

Well, there you have it. I was just losing hair faster than I could clean it up. Then Daniela walked by as I was sitting at the kitchen table and noticed a growing bald spot on my head. So, I took the initiative and shaved off all of my hair.

I'll try growing it back in the Spring!!!

Where's My Morphine???

Wow! I am amazed at the degree to which the morphine had masked the pain and discomfort that results from the Neulasta shot I receive on the day that follows my bi-weekly chemotherapy treatments. The shot stimulates the production of white blood cells because it is white blood cells that are inadvertently destroyed by chemotherapy. And as a result, there is pain that shows up in the body's largest bones since that is where the greatest number of white blood cells are produced at this faster than normal rate. A little Extra Strength Tylenol seemed to help reduce the pain a little bit.

Had I known, I would have waited to kick the morphine until after my full regimen of chemotherapy was completed in the Spring of '09 and as a result, had a far less painful experience. Oh well. Too late for that!

Eat, Drink and be Healthy

In their November 2008 issue, Ode Magazine printed an excerpt from French psychiatrist and neuroscientist David Servan-Schreiber 's book Anticancer: A New Way of Life. He discusses the impact that diet, exercise and a positive attitude has on healing. It's a great article which provides another push forward in our cultural conversation about cancer and our bodies. Click here and have a look!

Hairball!

Oh yeah! That would be a ball of my hair in my hand. It would seem the Folfiri chemotherapy is starting to pick away at my hair follicles. I'll be sure to post the bald photo should it get that far. However, considering how thick my hair grows, it may take a while for that to happen!

Movember

Have a look at this great and playful organization: Movember founded by Adam Garone in Australia. It exists to raise money and awareness for men's health - specifically Prostate Cancer - by the growing of mustaches every Novmber!

Excerpt from Daily News article:

"Mo" is Australian slang for mustache, and turning November into Movember is the brainchild of a former Melbourne phone executive, Adam Garone. Instead of strapping on sneakers for a walkathon, Garone and his fellow "Mo Bros" did something far more grueling - they raised money by growing mustaches for a 30-day whiskerathon. "The mustache is male only, and we wanted [to raise money and awareness for] a male-only disease," he said.

Read more or watch a short video interview. Note: At two different times during the video interview, the interviewees do use some slightly provocative language or terminology that I wouldn't want my 10-year old hearing. Just thought I would let you know in case yours is sitting next to you!

Giving Thanks

Being that we are coming up on Thanksgiving here in the USA, it dawned on me that it is time that I acknowledge the difference this blog has made for me. Sharing my updates, excitement, concern, joy, fears and insecurities has been incredibly fulfilling because it has allowed me to grow in ways that I had never imagined. The more honest I am with you, the more freedom I have to truly be myself everywhere else in life. Once "the cats out of the bag" there's no more pretense. I then find the freedom to be the real me and finding the freedom to be my true self with the people in my life - in my world - is a real privilege.

And why am I telling you this? Because if you didn't read it, it wouldn't exist as a blog. It would be my private internet diary. And although I initially started the blog only to inform those in my life of my health status and eventually the needs of my family, as you just read, it has become much more than that to me. So, thank you.

That being said, I would like to offer you an opportunity to ask me any questions you might have about my experience. Really - anything.

Anything from D-Day [in my world, that would be Diagnosis Day!] right up to today or my future or pre-diagnosis for that matter. It has been great to have you along thus far and at it just makes sense that you may have a question or two.

I am also aware that many people enjoy the anonymity of the internet and would not be interested in advertising their names with a question regarding the intimate details of my life. So, if you have a question and prefer to remain anonymous, simply click on "comment" under this or any other entry. Below the comment box is an option to post your name with the comment or to remain anonymous. You can even click on preview to confirm that your anonymity has been maintained.


Also, I now have a section on the left side of the blog for those of you who would like to add yourself as a follower of the blog. Initially, I couldn't think of a reason to have it here until the other day when it dawned on me that it might interest you what different types of people follow this blog. Via Google Analytics, I am able to see the number of people who read the blog, but what had me decide to add the "follower" section to the blog was the number of repeat visitors
revealed to me on my Google Analytics page. And no, I can not see who the visitors are - only what part of the world you click in from (essentially, the city or town location of the server you use) and the frequency of which it is visited. And I guess that also led me to ask folks to consider becoming a follower - so I can see who you are. I love the relatedness this blog has created.

And this blog has not been just about me for quite some time now. Your comments have made that quite clear. If you do choose to become a follower, again, anonymity is still an option for those who choose to not paste your face "all over the internet." You can post any image you like an even a username other than your birth name. Have a look at follower section. Reverend Malachi is a perfect example!


And yes, as Maria posted a comment about her experience with chemo-induced insomnia in a comment not to long ago - it is very real. And it is currently a part of my life. My friend Jim mentioned that a little golf seems to ease him back into a relaxed mode when he can't sleep - putting I suppose. But I imagine I would need a putter and a golf ball to achieve such peace and that I do not not have. However, a bowl of cereal and the internet sure are a beautiful thing when I'm wide awake in the "middle of the night." But an a more personal note, add insomnia to my already fuzzy chemo brain and it's amazing I remember anything Daniela asks me to do. God Bless her. I love you sweetheart!!!

Relapse vs. Mortality Statistics

At my meeting with Dr. Allerton yesterday, he reviewed with me the statistical probability of cancer relapse and cancer mortality. The analysis was based upon:

1. Age: 38
2. Gender: Male
3. Comorbidity (Health Status - other than cancer diagnosis): Perfect
4. Depth of Invasion: T4 - Maximum within the stage
5. Positive Presence of Lymph Nodes: 1
6. Examined Nodes (following surgical removal): >10
7. Histologic Grade (Stage):  Grade 2
8. Stage 3 (I was a stage, but treated as a Stage 3 due to minute cellular presence of cancer cells in one lymph node)

Calculation of risk of relapse within first 5 years 

without current post-surgery chemotherapy: 49%

Calculation of risk of relapse within first 5 years 

with current post-surgery FOLFURI chemotherapy treatment: 20%

Calculation of risk of mortality within the first five years 

without current post-surgery chemotherapy treatment: 42%

Calculation of risk of mortality within the first 5 years 

with current post-surgery FOLFURI chemotherapy treatment: 22%

I then asked Dr. Allerton if the software was able to account for there being no traceable cancer in the tissue removed with surgery and he said it was not. My specifics results are extremely uncommon in the world of oncology so there is no statistical equation for it. It's pretty much a random occurrence in their world.  (Gerson Therapy, BABY!!! Thank you everyone for your support. xoxo) However, he did provide say that considering the 100% disappearance of cancer from my system, the risk of relapse or mortality is even lower. I didn't ask him for a number, but I say it's down by another 50%, putting it at 10% relapse and 11% mortality.

I have to be honest - 10% ain't perfect, but it's pretty damn good when it comes to cancer. Yesterday was a good day.

#4

I am thrilled to tell you that it seems I am 100% free from my morphine DTs. I have not had any withdrawals since Saturday. Pretty cool, huh?

And I can now say with confidence that any concerns anyone has about my addiction and the possibility of my going back on morphine, can rest easy. I can say with certainty that it has not even crossed my mind to take morphine at this point. The addiction was 100% physical - not at all mental.

I also had an opportunity to be able to talk about my use of morphine addiction with a fellow chemo patient today. She's an elderly woman who has serious reservations about taking morphine. The reason? Fear of addiction. It's amazing how powerful an impact addiction can have on a person - even those in a great deal of pain, like the woman I spoke to at the clinic. She even acknowledged the absurdity of her decision, given that she is Stage IV, and at this point, receives chemotherapy treatment in order to extend her life for a little while longer. The doctors do not believe it will disappear.

So, I received my day one chemotherapy treatment today - #4 out of 12. I am now one day short of being one third of the way through my regimen. And I am thrilled to say I was given a different anti-nausea pre-med: Reglan - which also provides hiccup relief. And the result? For the first time in my history of chemotherapy treatment, I did not immediately fall asleep from an anti-nausea pre-med. I actually hung out and talked with my friend Jerry and the staff throughout the entire treatment.

And the real breakthrough is that I actually drove back home after the treatment. But rest easy - I was not pushing myself or being careless. I drove because I felt great. Jerry and I even stopped at a classic Upstate New York style diner for dinner because I was starving. And again, this was for the first time in the history of my chemotherapy treatment - to eat anything following chemo. Today was a great day.

Hopefully I'll Fall Back Asleep Soon

I still seem to be experiencing morphine DTs around the hours of 10 & 11 PM. However, it is significantly less than the previous experiences. What really throws me is not being able to sleep at night. I fell asleep around 10 PM this evening then woke up at 2:30 AM. It's 6:23 AM right now. Hopefully I'll fall back asleep soon. And hopefully this isn't a result of chemo and therefor to be expected from now until April - that would be a bit much!

Side Effects or Symptoms

The DTs don't seem to be showing up at the moment. Last night that "caught myself falling from a chair" feeling got pretty bad and kept me awake a couple of different times last night. Right now
I feel like I have a cold – soreness in ears and slightly in throat and a little achey. I'm uncertain if it's DT side-effects, chemo side-effects, chemo-related weakened immune system side-effects (sometimes showing up as cold-&-flu-like-symptoms) or maybe even actual cold symptoms.

And which ever it is, I look forward to these morphine DTs disappearing for good.

The Beautiful Truth

Below is a link to a trailer for the new film on Gerson Therapy and the modern approach to healing cancer. The trailer is quite short, just click on the image below.

Somewhat Maddening

Well I made it through the day pretty well. There was not a lot of pain. The emotional roller coaster is pretty intense. I was deeply moved by many things. Not uncommon for to be deeply moved, but the degree was extreme even for me. Once the sun began to set, I began to feel better and better. By dinner time, the pain was just about gone. Amazing.

Then about an half an hour ago, I started getting really tired. And now my body is doing the tense muscle thing again where the muscles have the extreme sensation that they need to be flexed. It's like they want to twitch but they won't. To tell you the truth, when it happens, it is somewhat maddening. All I can do is just ride it out. And I hope I get some relief from it so I might have an easier time sleeping tonight.

Man these DTs are nutz!

Pain & Discomfort

At about 4am I woke up with my muscles feeling that way that I imagine only a physical addiction can create. It's the strangest feeling. It's as if the muscles ache as they struggle to move and I say that because movement relieves the ache. But the relief is only temporary because the minute I stop moving, the discomfort returns. And to wake up to it as I did this morning is quite a shock because I instantly started moving as soon as I woke in order to create some kind of relief. Fortunately, for some odd reason, I experienced some relief after about twenty minutes of discomfort and that relief is still relatively present.

And at the moment, I feel alright. Not great. But alright. We'll see how the day goes. Only one to three more days of this and I should be on the other side of it. At least that's what Daniela read on-line about quitting morphine "cold turkey."

Speaking of which, I suppose if I'm going to quit this stuff "cold turkey," I am going to suffer. But the way I see it, I don't want to drag this out. If I'm going to do something, I want to get it done so let's get on with it. So, if to end this addiction abruptly, I must experience a little pain and discomfort, so be it. Let's just get it over with.

Withdrawals Continue

I slept relatively well through the night and woke up feeling like I have a fever. I think that is the best way to describe how I feel at this particular moment - like I have a fever. However, the remedy for relief would only perpetuate the addiction and prolong the pain from withdrawal.

So, I will continue to stay as immobile as possible and simply rest my way through this experience. My body still hurts as I described yesterday, but it is at a slightly lesser scale.

...and reeling...

The pain I am experiencing from this withdrawal and detox is fascinating. The pain is throughout my body from my toes to my eyeballs along with hot and cold flashes that come and go. The greatest aches are from my elbows and forearms into my wrists and hands as well as from my hips through my knees and into my calves and ankles. I also have pain in my eyes - directly under my eyelids. And the inside of my mouth hurts as well, specifically the roof of my mouth.

Throughout the day I have also had back pain in the thoracic vertebrae. Daniela has kindly rubbed my muscles when the pain has gotten intense. At the moment, my hands are killing me, but for some reason it's not making typing difficult. And my ears ache as well. Ya know, I guess it's safe to say that I am in pain just about everywhere in my body - from my toes to my eyeballs [I feel like I've heard that somewhere].

So that's the update and I hope I can tough it through without taking anymore Roxanol. I want to get this over with as soon as possible.

My Body is Reeling

My body is definitely reeling from this morphine withdrawal. I ache from head to toe - muscles and joints. Even the skin on my forehead aches. This is not something I am used to.

Thank goodness there are football games on right now. And thank goodness we had a back up TV. Our good TV bit the dust the other day. Fortunately I was able to lug the old one from the guest room down into the living room. Between chemo-brain and morphine withdrawal, staring at a television is a VERY EFFECTIVE way to deal.

I'll update you if anything changes...

My Latest Adventure

My latest adventure, with the help of Dr. Allerton, is to get off of morphine for good. I was on a 25 microgram patch for...quite a while...many months. A month or so ago, Dr. Allerton put me on a 12 microgram patch for which I noticed no withdrawal symptoms.

On Friday November 7th, my patch was due to be replaced (they must be replaced every three days). On Wednesday November 5th, during my chemotherapy treatment, Dr. Allerton recommended I not replace the patch on Friday and instead simply take a 5 mg dose of Roxanol (liquid morphine) when ever the withdrawal symptoms become too much to deal with. The idea is that I will eventually no longer require the Roxanol and be able to push through the detox symptoms (commonly know as DTs) without the use of it.

I'm looking forward to no longer being on the stuff. As I have posted in the past, I have woken up in the middle of the night going through a detox because I forgot to replace my patch a few different times and it's quite an unpleasant experience. I definitely look forward to being without it. The only part I left out is asking Dr. Allerton how long this process is expected to take. I'll have to send him an email and find out.

Thank You

Thank you for your support. Simply showing up on the blog and checking in to see how I am doing means a great deal to me and because of it, I do not feel alone. Or maybe I'll say it differently: because you show and and check in on me, I feel supported by more than just my family and immediate community. And I thank you because of the extraordinary difference it makes to me and those closest to me.

A Choice Well Made

Good news from Dr. Vakios in the radiation department. He said there are no studies or statistics to refer to when it comes to a case such as mine, i.e., no present sign of cancer following chemo, radiation and surgery. So, he does not recommend treating with radiation at this time unless, as he put it, "I have deep, deep gut feeling that radiation is the right thing to do at this time."

Well there are always dangers when radiation is administered. And at this point, my gut feeling says go forward with the chemotherapy unless something changes. I have three more tests (one every three months) within the next nine months to scan for the presence of cancer and at the moment, I do not feel a need to go forward with radiation. So, I will stick with Dr. Vakios' recommendation. Should there be a sign of potential reoccurring cancer, then the possibility of radiotherapy will be revisited.

At the moment, I feel quite toxic from Wednesday through Friday's chemotherapy treatment. So, I am staying active, doing things around the house that are safe and will not put anyone in danger, since I am currently a bit "spacey" due to the chemo's impact on my brain - "chemo brain" as it's called.

I also want to add that I really enjoyed my meeting with Dr. Vakios. My experience of him was of a straight shooter - the kind of doctor you want to work with when your intention is to stay alive. My gratitude is extended to Guthrie/Robert Packer Hospital for a choice well made.

I Am Back on the Chemotherapy and Happy to Be

I am feeling well - cold symptoms gone - and I have returned to chemotherapy. Day one and two both consisted of Folfiri infusions in the clinic and at the end of both days I am sent home with a 5-FU pumped attached to my port. Today is day three, so I go in to have my 5-FU pump removed. I am a little tired and a little dizzy. I am also experiencing hiccups and heartburn like last month, but I am not nauseous so far and that's a plus.

I will also meet with Dr. John Vakios today, the new radiologist at Guthrie in Sayre, to discuss the possibility of additional radiation treatments. If he recommends more radiation, which I think he may, I will likely obtain a second opinion. My decision to get a second opinion or not will be heavily on whether or not he has dealt with a case such as mine - where there is no longer a traceable amount of cancer in my body.

I must confess that getting a second opinion in another hospital where my insurance is accepted sounds a bit exhausting to me, but I keep reminding myself there are dangers if I do additional radiation treatments as well as if I don't. Bottom line is I will have a better idea after I speak with Dr. Vakios this afternon

Election 2008

      

Good Luck One and All!!!

What the Ostomy is Like for Me Lately

Lately, what's confronted me is how to deal with a certain aspect of my ostomy. And it is an aspect that I have not been to thrilled to be blogging about. Gas. See, now that my large intestine finds its way out of my body on the left side of my abdomen and is no longer attached to a sphincter muscle, I no longer have the capacity to manage it at will.

Okay, so right out of the gates, we're all clear that because of the ostomy I am alive. That's no secret and I would do it all the same were I to go back in time and do it all over again. So, although I am not without gratitude, and happy to have gotten back to a somewhat normal life, I am committed to living a life as "normal" as possible and that would include life without the unmistakable sound of gas exiting my body - at an inopportune time to boot. [did i spell that properly?]

Again, it's not life ending or even a threat, but let's be honest - we have a cultural conversation in this country about not passing gas in public - or at least not loudly - unless of course you are in the company of those whom you most enjoy laughing joyfully about the sounds your bodily functions. Unfortunately, I have yet to create that relationship with every person I know and for that matter, all those I don't.

I have begun to take on certain proactive methods of dealing. Beano, for one.

[...i can't believe i am even writing about this. gas is something i either hide from others or laugh about among those i'm close with. not something i have mature conversations about. and now i'm talking about beano. how awkward!!!]

So, yes...Beano. And I am also avoiding carbonated beverages and of course any foods that can put a bottle of Beano to shame. And then there is the irrigation.

Irrigation is a daily process that is an option for some people who have ostomies on the left side of their abdomen. It's very similar to an enema - something I'm a little familiar with. The idea is to flush out the colon first thing in the morning once every day or two and eventually have your colon trained to only empty following an irrigation at that time. Then the individual gets to wear what looks like a large bandage over the stoma as opposed to a pouch, which can sometimes be a bit bulky or, without irrigation, needs to be discarded at an inconvenient time. My hope is that I will be able to effectively irrigate in the near future. Not only will it be nice to be free of pouches, etc., but I believe this will significantly help with untimely gas once I get the hang of it.

In the mean time, at least my ostomy pouches have a very effective carbon filter. Oh yes, joy, joy. So, should I be "blessed" with unexpected gas at an inopportune time, I won't have to worry about the damage being any worse then the initial shock following that ever so familiar sound.

And now that I've made that clear, I hope we can all just move on and leave this topic behind.

Cold Again

I have found myself with another cold. And I'm very much hoping I will be overwith by Wednesday. I have got to get back to the Hematology Department and receive my chemotherapy treatment. I'm scheduled to be there on Wednesday November 5th and like I've said before - the sooner I get back to my treatment, the sooner my treatment will be complete.

To tell you the truth, I have had one heck of a pleasant chemo-free month. I've got some things done around the house and yard on the days I have felt well. It feels so good to actually be useful. And this Autumn has been so gorgeous, I have definitely taken advantage of it - walking as much as I can - again - when I am feeling well enough to do so.

In the mean time, I will continue to eat lots of miso soup with plenty of sea weed in it. It's a wonderful natural cold medicine.

Onodaga County 911

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

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

My Current Chemotherapy Treatment

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

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

Just Another Thursday Afternoon?

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

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


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

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

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

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

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

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

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

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

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

Some OTHER Side Effects

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

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

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

It Really Is Gone

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

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

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

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

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

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

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

I Was Mistaken

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

Feeling Better

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

I'm Back

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

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

Just kidding!

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

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

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

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

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

thank you Kevin & Claire for a fantastic wedding favor

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

...wow...

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

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

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

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

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

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

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

WELCOME

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

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

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

the hero's journey

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

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

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

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

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

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

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

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

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

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

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

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

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

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

xoxodaniela

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