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!!!