Twenty Weeks Post-Chemo

I've received messages from people currently under treatment for similar diagnoses as mine, so I thought I'd provide an update twenty weeks out from my last FOLFOX chemotherapy treatment.

• FOL– Folinic acid (leucovorin)
• F – Fluorouracil (5-FU)
• OX – Oxaliplatin (Eloxatin)

Side note: Oxaliplatin was removed from my prescription for treatments 11 & 12, due to the continued neuropathy.

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

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

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


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

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

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

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

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

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

Three-Quarters of the Way There

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

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

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

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

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

Depressed, Hopeless & Angry

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

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

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

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

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

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

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


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

Getting Through Each Day

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

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

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

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

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

The Last Few Days

Well, Wednesday I went home from the hospital with a pump inside of a fanny-pack hanging form my hip. It had 5-FU chemotherapy in it and pumped continuously through Friday at 1:30 PM (a 46-hour drip). On Thursday, I sat around the kitchen table with friends and we played our guitars. It felt great to be out.

And when I woke up Friday morning, I didn't want to get out of bed. The toxins felt heavy running through my body and once I did get up and ate some food, the nausea revealed itself. However, once I got moving I felt a little better. I got to the hospital, they unhooked the pump and then gave me my Neulasta shot (aka Pegfilgrastim). Neulasta is an e coli based pharmaceutical designed to stimulate white blood cell growth. The side-effect is pain in the bones, similar to flu symptom type aches. I felt them for about 24-36 hours after the shot. Reason being is because it's the bones that create the white blood cells and as since the Neulasta causes an serious increase in production, it actually hurts. I took Tylenol for it as recommended. It seemed like using a Dixie cup of water to put out a camp fire.

So, I returned home from the hospital on Friday, only to feel nauseated again. I spent the afternoon laying on the couch occasionally stoking the fire in the wood stove, a nice feature when feeling a bit gloomy. Late afternoon, a friend came by with dinner and talked with me until I was started falling asleep. On Saturday I woke up to the sound of my friend's voice. Again, the toxins felt heavy running through my body. The only difference between this day and the previous was the nausea didn't wait around for me to eat something and and my bones were aching from the Neulasta shot. My friend put some water on the stove for tea and we talked while I got acclimated, unfortunately, to feeling like hell.

My folks came by on Saturday afternoon and spent the day with us. We had a nice day together and went for a walk down the street to see the neighborhood waterfall in hopes that some movement might help me feel better. A little later in the afternoon the nausea got bad so I took an anti-nausea med. Thank goodness my folks were here when I did. The stuff knocked me out cold, which is not workable when I'm caring for my little boy. So on Monday, I will put in a call to the doctors office and ask them to do what the insurance company requires so I can be prescribed the next best anti-nausea med on the list (the insurance companies like to put their customers on the less expensive medications first, then work them up the ladder as needed).

This morning I still felt nauseous but seemed to move through it a little easier. The poisoned feeling was still pretty strong as well. Once the afternoon came, we went to a friends house for a play date, where I could just rest quietly on the couch and watch football and move through the waves of nausea. The little guy having friends (he loves) to play with while I rest easy really makes a huge difference. And my being around friends I love, happy to be with me while I'm not feeling well, definitely makes a huge difference for me.

I'm feeling significantly better this evening. Perhaps round one of chemotherapy will wrap up tonight.

They're Here!

Well, on Wednesday I noticed the lack or taste in my mouth, which is the best way I can describe the one of the symptoms I experienced during my previous chemotherapy experience. It's an experience that leaves me wanting to put a piece of candy in my mouth to cover up the bad taste, which again is more like a lack of taste. Then there's also an experience of tightness behind my eyes and in my nose. Both the mouth and the sinuses are soft, mucous membrane tissues and thus effected when the body is being administered chemo, medicine that kills rapidly developing cells. And as anticipated by my oncologist and her staff, the sensations are minimal, and certainly nothing compared to the side-effects I experienced in 2007 & 2008.

That being said, I've been anticipating the upcoming systemic treatment, wondering how my body will feel on December 14th and the weeks to follow, once I start the systemic chemotherapy treatment. Initially, I stopped scheduling any coaching sessions and planned on scheduling no musical performances. And then a friend supported me in distinguishing how I had put the cart before the horse. Once I noticed that, I scheduled coaching sessions and I'm in the process of booking a couple gigs if there are available dates where I prefer to perform.

However,  I noticed I was still doing it, if not with scheduling my life, at least with my general attitude about "how it's going to go." The reality is I really don't know how it's going to go, so my intention is a pleasant and joyful experience of each moment. Should life circumstances show up otherwise, I'll manage that when the time comes. But either way, the side-effects have started.

Lately...

I haven't written anything in while because each time I start an entry, it becomes too much for me to complete it. It's come to the point that I can rarely concentrate for long periods of time. And the last two posts I attempted were reflections upon my current state; they're unfinished and in my Drafts Folder because it's just too much to write the type of entry that takes any significant amount of thought.

I experience a significant lack of motivation along with low self-esteem and low energy. Again, I'm clear these are side-effects and not my emotional response to my experience. My current emotional response is more of frustration and feeling a bit beaten down. The closest thing to depression I experience is much less depression and far more a case of the blues, as a result of being frustrated and tired of all of this. Which brings me to my next thought which is, "Thank Heavens I am nearly done" and "Dear God, may I please still be cancer-free following my next scan so I don't have to do this all again because it is really hard?"

And on that note, I'm going to sit on the couch with Beau and watch his favorite morning program.

Responding Quite Well (apparently)

I'm looking out the picture window over the creek and the sun is shining so brightly I can barely stand to look at it [I took the photo after the clouds passed in front of the sun]. But the sound of the rushing water - due to the significant thaw we just had - is quite a soothing sound, which I really appreciate considering how I am feeling right now.

And speaking of how I am feeling...as far as my side-effects go, on Wednesday, I felt nauseous from about halfway through my treatment until the wee hours of the morning on Thursday. On Thursday, I felt less nauseous and more toxic and lethargic. On Friday, I felt beyond lethargic - I was exhausted.

Oddly, on Thursday, one of my favorite nurses told me I was responding quite well to the treatment, which meant the side-effects I was experiencing were quite minimal. That left me feeling relieved, yet at the same time, my heart really went out to the other folks whose symptoms are worse than mine. Most of my fellow patients are significantly older than I am and it saddens me to imagine what many of them are going through.

Naturally, I asked my nurse what additional symptoms my fellow experience. And guess what? She wouldn't tell me! She reminded me that, in the past, I had manifested the chemo side-effects the day prior or the morning of my treatments and she had no interest in my doing that with any additional symptoms I wasn't even experiencing. And either did I! No argument from me! Thank goodness she had the foresight to keep it to herself. Not every nurse would have responded that way. She's a sharp one - thank goodness.


I am also so grateful for the rides I received to and from the clinic every other week. Sayre, PA is an hour drive each way, not to mention the hours spent sitting with me as I receive the pre-meds and then the infusion. I tried to drive myself a couple of times and that clearly did not work. The pre-meds and the chemo are just too strong. And I can"t imagine Daniela going with me and chasing Beau all over the hospital for five hours - not to mention the days our 11 year old needed to be picked up from school before Daniela and I would have arrived home or the days he stayed home sick from school. And I still can't figure out how people go to work while on chemo, unless they simply don't have such difficult side-effects. Between the nausea, lethargy and chemo-brain I experience, I can't imagine myself at work being anything less than a huge liability!!! And, assuming my post-chemo tests in April come back clear, all of this will be over soon.

Less Than Pleasant

This Folfiri (chemo) is odd stuff. This time around, I'm not experiencing a whole lot of physical discomfort nor the feeling of being poisoned. Instead I am feeling depressed. Actually, I should state that differently - feelings of depression are present, and I am clear I am not depressed, but simply under the influence of this less than pleasant drug. I'm doing my best to stand back and observe them objectively - essentially thanking my feelings for sharing and choosing an alternative. It's definitely taking some focus to stay on top of it.

I do have some physical discomfort - in my sinuses. They seem to be dry, which is expected, and as a result they ache. I am going to use the humidifier today and see what kind of results I can get. Right now it feels like I got hit on the nose with a baseball.

Oh well. The Super Bowl is on this evening and I 'm definitely looking forward to it.

Candidate for Inspiration

In addition to the regular side-effects I experience from chemo, this latest round has made me very sleepy. I slept throughout the day yesterday. Then at around 11 pm I went to bed only to lay there wide awake for about an hour. So, I went back downstairs and watched a couple movies until 5 am at which point I finally fell asleep.

Fortunately, I am well rested for the NFL Conference Championships which are on today. These should be some exciting games. And as I've said before, watching a great game inspires me. And I still consider myself a candidate for inspiration. Now if I could just get this lousy chemo-induced taste out of my mouth!!!

Tuesday's Anomaly

On Tuesday December 30th - day two of my 7th chemotherapy treatment - I surprisingly, felt well. I got inspired and at 10 PM, I was at Castaway's - the club in Ithaca that generously hosted our October benefit - for Reggae Tuesday. Reggae Tuesday is a weekly event in which all are welcome to join the house band on stage and participate in an impromptu performance of the song(s) of their choice.

I had been an occasional participant at Reggae Tuesday for a number of years - singing harmonies with my friends who write reggae tunes or occasionally performing one of my own which they masterfully play reggae style. But as you can imagine, stage performance hasn't exactly been on my mind for the last year and a half.

Well, Tuesday December 30th was an anomaly in my chemo-filled world and I can say I had an absolutely amazing night. I was up on stage in a way that I have never been before. I didn't nail every harmony nor did I expect to, but I did some lyrical improvisation like I've never done before. Most importantly, I returned to the stage with two of my dearest friends - Rob & Kevin - which meant more to me than I can put into words. However, I can say with certainty, I felt like the life I had before cancer was returning to me.

I have no plans to get back on stage before my chemo treatments are over. I'm not saying it won't happen, because I never imagined I would have it in me to begin with. I simply consider it a gift that I accept with no expectation attached. Right now I will simply keep my shoulder to the wheel as I tolerate these bi-weekly infusions. They certainly don't get any easier. And as soon as I receive some photos of the evening, I'll definitely post them!

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.

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.

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.

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!!!

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!

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!!!