Thursday, July 31, 2008

CT Scan...and Staples

Finally my staples are gone - what a relief!!! Those things were driving me nutz.

I also had a CT scan and blood work to determine the source of my recent abdominal pain. And in looking for it, it seems I may have a slight infection near the top of my backside suture. That explains why I still have a little pain when I sit - I had just figured it was post-surgery pain.

Fortunately, I was given an antibiotic to take home with me. I say "fortunately" because prior to be given the prescription, Dr. Cagir informed me that I may need to be re-admitted and administered an IV antibiotic as well a drainage catheter. So, we waited an hour until a well-respected radiologist had the opportunity to review my CT scan and provide Dr. Cagir with a second opinion.

Initially I FREAKED at the thought of being re-admitted. And then after a few minutes, I was able to relax and realized that it would likely be nothing more than a boring hospital stay with minimal discomforts. Initially upon hearing that I may be admitted again, my brain went to the only experience I recall as an admitted patient: heavily drugged and occasionally in a great deal of pain. Oh. And with a room mate who woke me up every single night at 1 AM & 4 AM until I finally got my hands on some soft ear plugs to sleep with. In his defense, he was 87-years old and confessed to being hard of hearing and forgetting - at 1 & 4 AM - that he had a room mate.

And he was very apologetic for being hard of hearing. He compensated for it by yelling when ever he spoke to any of the hospital staff or whenever he spoke to his wife when she came to visit. And of course they all provided him the same courtesy of yelling when they spoke to him. It was a real treat for me when ever he met with the staff and/or his wife. Oddly enough, when his two sons-in-law came to visit, they would talk for over an hour and no one seemed to need to yell to communicate...

Anyway, I will be scheduled for another CT scan in one to two weeks to make SURE there is no infection. Apparently, once a bad infection shows up in tissue that has been radiated, i.e., my backside, it can take "forever" to be healed (or so said Nan, my Nurse Practitioner).

So, as much as I despised the idea of being re-admitted, by the time I thought it through, I was perfectly content with it. When Dr. Cagir prescribed an antibiotic and sent me home, I asked him, "Are you sure?" I have no desire to take ANY chances. He assured me it would be okay because I am to be scheduled for another CT scan in the next week or two to keep an eye on things.

Wednesday, July 30, 2008

In Need of My Patch

On Tuesday night I went to bed around 1:30 AM or so. I was quite tired and looking forward to some deep sleep. After almost falling asleep a couple of times, I found myself wide awake but I also felt a strange sensation in my arm - a tension like sensation. I shook my arm a few times just to get the feeling out. Then I had the same experience in my leg. Eventually I went back downstairs and laid down on the couch. If this was what falling asleep was going to be like, I would at least do it downstairs where I wouldn't wake Daniela and Beau.

I read for a while until I could no longer bare to do so any longer. I found myself filled with tension and an inability to concentrate. All of a sudden it hit me and my eyes were as wide as saucers - I never put on a new Fentanyl patch aka morphine patch. My morphine patches must be replaced every three days and last night at 3 AM, I was about 5 1/2 days past due.

Yup. I was in the early stage of morphine withdrawal. I immediately adhered a new patch to my leg and then took 2.5 mg of Roxonal (aka liquid morphine) - what I consider a half dose - since it would be a while before the patch made its way into my system.

If you have a concern about how much morphine I took between the patch and the liquid, you need not worry. My tolerance is quite high compared to someone who does not take morphine. If I gave you 10 mg of liquid morphine, you would probably throw up and then sleep for three days. I on the other hand, would take 10 mg of Roxonal on top of what I get through the patch each day and I would relax on the couch to a good movie or read a book. It's not the intention, just the result of 10 months of daily morphine usage.

So anyway, I figured I'd fall right asleep. Oh no. It was about 3:30 AM when I began to feel some relief. And at 4 AM - I couldn't believe it - I was wide awake and not about to fall asleep. By 5:30 AM I began to wonder when exactly I would fall asleep. At 6:30 AM I woke up and fell back asleep. Aaaahhhhhh. How peaceful.

Daniela & Beau came downstairs at 8:36 AM. I thought I would head upstairs and get in a few more hours of sleep. Well I never made it upstairs and I've been awake ever since - right now it's 10:15 PM.

What an odd experience to go through all of that last night and then to be wide awake all day today. On a good note, I went through two days without a new patch without any serious pain. Granted it takes a bit for the morphine to exit the human body when you've been on it as long as I have. But it's a good sign. I should be able to start weaning myself off of the stuff which I very much look forward to. Because not being able to sleep at night because "I didn't get my fix" ain't exactly something I want to continue any longer than I have to. And you can be darn sure I will adhere a new Fentanyl patch every three days as long as it's a part of my pain regimen.

A Bit if Anger

Lately, I found a bit of anger moving through me "when I wasn't looking." It showed up a little indirectly - by way of my complaining about this person or that person or maybe every person I could think of. Oh and no. If you're wondering, it wasn't you. It was everybody else. And I didn't even realize I was being so negative until Daniela spoke up. It was just flowing through me without much notice by me.

What really got me square in the face was yesterday afternoon. I felt inclined to turn off the ball game for a little while and I took a moment to pray. As I was giving thanks to God for all I have been given, the thought went through my mind, "I have no faith in you. All my faith and I have a colostomy to show for it." Well trust me, it was no sooner that I thought it than I was deeply humbled by my own arrogance. After ALL I have been blessed with - a beautiful family, endless support from my community and then to be declared CANCER-FREE, it hardly seems sane to have lost faith. Sure glad I wasn't put to the test like Job. I barely made it this far.

So anyway, no. I do not want a colostomy. And trust me. I was humbled to tears that my faith had wavered so deeply after being so blessed. And, I am grateful that I took the time to pray at that moment, so I could see myself and where I am in this process. I also want to acknowledge it is not my intention to boast. I only want to honestly share what I experience because it was so very powerful.

And for Daniela, it has not been easy to hear all my complaining lately. ONE, because I haven't even been complaining about anything anyone has done. As I look back, I've essentially just been complaining about different people's various faults. Heck, if I want to complain about that, I've got fuel for a lifetime of complaints. I can add myself to the list for that matter. And TWO, she can see quite clearly that something is going on for me, yet she doesn't need to hear so much negativity. And that has been difficult for me as well. What a cranky old bum - Shut up!!!

Don't get me wrong - I wasn't going on and on all day long. But it was enough that we both noticed it. And I can see I've been mad about a combination of things - all that we have been through emotionally, financially, physically, spiritually. There has been immense beauty in this experience and clearly not without a cost.

I'll find my way to peace with this colostomy - you can be certain about that. But right now, I'm pissed that I have to deal with the thing. And I didn't really realize it right out of the gates because there was no ONE to be mad at - no one to blame. Fortunately, at the moment, my experience of the colostomy care feels more like the times I have had a cast on a broken limb and had to manage it. It feels temporary. yet it's so unbelievably foreign and odd and absurd that I truly can barely get my head around the permanence of it. But obviously a part of me is very aware of the permanence of it all. And clearly not pleased.

So, I have been reflecting upon that a whole lot lately. I am deeply grateful for the privilege to have life and indeed a cancer-free life at that. Taking a minute to be with that, my gratitude is truly greater than I can express. And it's odd to be so grateful for my life and at the same time, angry about the colostomy. Not an uncommon experience in life - gratitude and disappointment at the same time. But it's hard to compare similar experiences from the past to the last 16-months of my life.

Tuesday, July 29, 2008

Gerson Flashback???

It seems I took the weekend off from blog posting. By Sunday night my hope was to post something on Monday afternoon (yesterday), but at 4 AM on Monday morning I woke up to intense abdominal spasms. By 4:30 AM I took a Vicoden and sort of fell back asleep. I eventually woke up around 8 AM and spent all morning and early into the afternoon reeling from the pain. If I was on my back, the next spasm would have me on my knees and leaning over the back of the couch or on my knees and bending down with my head on the cushions - the way a newborn baby sometimes sleeps. Eventually, I would wake up in one of the said positions from another spasm and either turn over and lay on my back or my side in hopes that I would fall asleep before the next spasm came. I felt like a slow moving rotisserie chicken, minus the heat of course.

And the toughest part about it was that my brother, who I haven't seen in over a year, was in town for only 24-hrs. He arrived Sunday at 2 PM and we had lunch with our folks and then he left around 4 PM on Monday to have dinner with them and then see my Mom's performance at the Merry-Go-Round Theater in Auburn. Not how I hoped our visit would go. Our relationship has grown so much since our adolescent years where being right about...whatever...was more important to me than the little bit of compassion it takes to have a great relationship with one heck of a great guy. The best part was when I attempted to eat some cereal to help my stomach tolerate a dose of Cipro (antibiotic) - prescribed for what seems to be a UTI resulting from the catheter I was blessed with for most of my hospital stay. I got about a half a bowl of cereal in my belly before my stomach decided it would be happier empty. Yeah. I have to say that vomiting just short of two weeks post-abdominal surgery with staples in my abdomen isn't exactly a recipe for a good time. I rarely consider the feeling of someone taking their hand and gripping onto my abdominal staples and pulling as a fun. Then again, I've been considered a bit odd now and again - maybe it's just me.

Anyway, by mid-afternoon, Daniela decided to call my surgeon's office for their input. She had talked to me about it earlier, but since I had no fever, chills, etc., etc., I asked her to just give me some time. Well, once I threw-up we both agreed it was a symptom worthy of a phone call. After a short conversation with the Nurse Practitioner in Dr. Cagir's office, we agreed it was a little less than a "blockage" moving it's way through my intestines (not uncommon post-intestinal surgery) or possibly intestinal spasming. During our second conversation with the NP, she and I agreed I was dealing with intestinal spasming. It seems my diet was a little too rich when the family was here.

PAUSE - This is like a Gerson Therapy flashback: intense abdominal pain for long hours. Man. I had hoped those days were over. Even Daniela felt like we'd gone back in time to the days of the Gerson detox flareups.

By 6 PM, I was on strictly clear liquids and the spasming had seriously diminished, but it was still there a little. So, at 6:30 PM, I took some Milk-of-Magnesia and got everything moved out a little more quickly. The spasming naturally increased as I had anticipated, but I took another Vicoden and after about half-an-hour and a few very difficult spasms, I found myself peacefully relaxing on the couch watching the Red Sox (loosing unfortunately). The point was to move through whatever was triggering my intestines and get it out of there ASAP.

By the way, you may be wondering how sports ever found its way into this blog. Well after 13-years of living without cable or antennae, we decided to take advantage of the local cable company's internet/telephone/cable deal - same price as what we were paying for internet and phone - you know how it goes. With all my "rest" and pain management, hockey playoffs into basketball playoffs into Summertime baseball has been the progression. As long as I stay away from television drama, I can control my addiction to the "boob-tube," which explains to you why I chose to be without it for the last 13-years. Some people find they can't stop drinking alcohol once they start. I have the same difficulty with drama TV. Some may say I'm "still using" even if I watch TV,
but there's nothing like a good ball game to keep me clean.

When I woke up today, I was a bit hesitant to move too quickly - concerned about another bout of abdominal spasms. Fortunately, I was free of such problems. On Monday night, the Milk-of-Mag moved the last of whatever was causing the spasming right out of my system. A
nd I ate very conservatively today. I'm going to ease food back into my body.

Oh. And most importantly, Dr. Cagir requested I have a CT Scan on Thursday, along with my previously scheduled appointment to have these staples removed, just to be sure all is well. I'm told I will feel much better once these metal hooks are out of my belly. I'll let you know.

Friday, July 25, 2008

I Want One!!!

Here's a link to a recent segment from John Stewart's Daily Show. Finally Castro and I have something in common. And to think of all the years I have been waiting to say that...???

A Beautiful Privilege

On Tuesday when Dr. Cagir informed me of the biopsy results, I understood what he said but I honestly couldn't really get my head around it. I kept thinking about it and indeed it filled me with joy, but after living for 16-months in the world of "I have cancer," it just didn't sink in.

However, this evening I spoke with a few different friends and it suddenly hit me - I don't have cancer. Sadly, there are people in the world who have cancer right now. And, I am not one of them. And to say that almost seems absurd or even false. Every day for 16-months there has always been one thing on my mind when I wake up that has not changed - the thought that I have cancer. And now when I wake up I still have that thought. I have to remind myself - You don't have cancer. And it seems so foreign.

I don't have cancer. I don't have cancer. I'm laughing right now because I can't believe I can say that. Sure I will have a little more radiation and then I'll have a serious chemotherapy treatment - 3 to 6 months - to see to it that things stay this way. But right now for the first time since Tuesday March 27, 2007, I can say with certainty, I do not have cancer.

I suppose I could write it 78 more times so I really start to get it. However, I think that would make for some really dry reading, so I'll save you the trouble and just read it to myself a few more times.

What a beautiful, beautiful privilege it is to say those words.

Wednesday, July 23, 2008

...One More Thing

I just finished reading all of your comments you posted while I was away.

Thank you.
It means so much to know that you are with us. And to come home and read all the kind and loving words you have shared with my family and me is very moving.

Now I'll take my nap.

I Feel Well Today

Just a quick note. I feel well today. I am sore, but I have no pain. I have not even been home for 24-hours. It's such an odd thing to be a patient at a hospital.

When I heard my room mate speak with nurses or family, I would think, "I'm different from him. He's 87-years old and this is normal." Then some time later it hit me pretty hard. No. He's just like me. He wants to be well and he wants to be home with his wife and his family.

Well last night at the dinner table with my family was one of the most beautiful experiences I've had in a very long time. Now I'm crying again. I'm going to go take a nap. And I hope my roomie from the hospital is doing okay.

Tuesday, July 22, 2008

I'm Home With Incredible News!!!

We arrived home at 4:35 this afternoon. As soon the car door was open, I heard the waterfall & stream and just got teary eyed. It is so good to be home. Surgery is such an exhausting and powerful experience. I did have a concern about coming home too soon. However, Dr. Cagir felt it was safer to be home and away from the hospital, than to be at the hospital where "super-germs" are known to thrive. So home we came.

25-minutes after we arrived home, Dr. Cagir called to inform us that the biopsy done on the tissue removed from my body was complete. ALL OF THE TISSUE THAT WAS REMOVED FROM MY BODY - TUMOR INCLUDED - IS 100% CANCER-FREE!!! What that means is the chemotherapy and radiation treatments, killed, dissolved or melted away 100% of the cancer that has been alive in my body. And what that means is that at this moment, I am currently 100% cancer-free. I can not begin to express what I am feeling in my heart right now.

Minimally, I will tell you that on the ride home I was dreading the coming chemotherapy and radiation treatments I will receive once I am recovered from surgery. Right now my only thought is that I will do what ever it takes to be cancer-free. My head hurts from the tears that have been streaming down my face for the last four hours. And I am so tired I can't write anymore and I have to close my eyes and go to sleep. I am sure I will write more tomorrow.

comin' home!!

hi all! bert should be home wednesday!!!

Saturday, July 19, 2008

thumbs UP & baby steps...

hi everyone! bert's recovery is going well. he has taken a few short walks in the hallway, and is taking enough pain medication to manage the pain effectively. talking to him is hilarious, as he either randomly says something from outer space, or he trails off, leaving him in outer space...he's still eating ice chips only...slow process getting the 'ole intestines back to working order. thanks so much for keeping him in your thoughts & prayers. xoxodaniela

ps. this was taken right after surgery. hospital-gown-green is not his best color!!! : )

Wednesday, July 16, 2008

surgery update

hello dear blog readers! bert's surgery went very well today. all of the tumor is OUT!!!! gone-zo. adios. later alligator!!!!! dr. cagir met with me after the surgery and explained that the tumor was removed along with surrounding tissue, and that the surrounding tissue was cancer free. he then explained that as they were removing it, the tumor split...we need to wait for pathology reports to tell us if the tumor was still alive or dead. if it was dead, no biggie. if it was still live cancer, not as good. we'll see...if he had to put a few nickels on one or the other, he thought dead tumor based on the way it tore...he also put a bunch-a little titanium marker-clips for some further radiation near the tailbone area. should not be more than a week or 2 of radiation. from there, more chemo...bert was true to his humorous form after he awoke from surgery. asked the nurse for a beer. the good doc messed with him a little after surgery. just as bert awoke, the doc said, "ok...are ya ready to go into surgery now??" i think he got him good for a moment! oh, i forgot to check to see if the doc indeed sewed his bottom together in the smiley-face-cross stitch...more to report tomorrow...g'night!! love, daniela

Monday, July 14, 2008

Incredibly Lucky

In case you don't remember, to stand in place has been very difficult for me. I have only been able to stand still for a minute at the most. After that, the aching pain of the tumor becomes too much. Also, sitting can be painful, especially if it's on a wooden chair. And walking...well, it doesn't hurt, but if I walk a significant distance, I will be in serious need of a bathroom and consider myself lucky if I get there in time.

Well on Saturday, I went to a friends house to listen to the final mix of my upcoming record. After the listening session, we hung out in the kitchen for about 45 minutes. What amazed me is that I sat on a cushioned stool with my Tempur-Pedic cushion for almost the entire 45 minutes with no pain. THAT is a first. Later we dropped off the CD for duplication and then went to dinner. Fortunately we were able to park across the street from the restaurant so the walking was minimal. But then we sat and had our meal for almost an hour and again I had no pain.

On Saturday I stood for three to four minutes at a time with no pain and even carried Beau in from the car again with absolutely no pain. I brought Beau in from the car again this evening and then walked him him upstairs to bed upon his request. [By the way, it was SO incredibly cute. I held both his hands as we climbed the steps and I watched as he stepped on the next step ahead of him only to then stretch his little leg over not just one, but two steps and then he continued this random pattern until we reached the landing. He didn't miss a beat. It was adorable.] So, my point is that although I am still on morphine, my pain level has gone way down. And since Dr. Cagir has noted major tumor shrinkage, I'm hoping this decrease in pain is related to the decrease in tumor size.

Believe it or not, the radiation is still attacking the tumor even this far along after the treatment has ended. So, wouldn't it be sweet if there was continued shrinkage and the tumor had zero contact with the pelvic bone? As you can imagine, that's what I'm shooting for.

And on the topic of the tumor, folks have been asking me how I'm doing considering that the surgery is only days away. Well, Daniela acknowledged that a week or so ago I was going on tirades about anyone and everyone - but of course not you. I was definitely uptight. On Friday I was still amped up. If it was 10 years ago and I was still drinking alcohol, I'm sure I would have put on quite a performance. I was clearly emoting quite well on Friday.

Now that that's out of me, I feel fine. I'm three days out from surgery and I'm definitely not stressed. I have no desire to be cut open and reconfigured - I hope that's a given - but at the moment I'm looking forward to opening my eyes on Wednesday following the surgery and being told everything went well. And other than that, the only other concerns I have is if the hospital will have enough channels so I can catch the Red Sox on Saturday and if the Sox will maintain their lead in the American League East. There's also my hope that the American League wins the All-Star Game so they have home field advantage in the Series, but let's not even open that can of worms.

There are other concerns as far as the outcome of the surgery and future oncological treatments, but no matter how much I worry or how scared I become, all the worry and fear in the world won't make the outcome of the surgery any better. Or the treatments that follow for that matter. At best it would just stress me out and make me miserable. And since that isn't particularly appealing and there isn't anything I can do but wait, I'm just going to wait. And we'll see. And to tell you the truth, all the inspirational perspectives in the world don't do a damn bit of good just because I can recite one after another, but for some reason right now, the one I shared about worry and fear is simple & true for me and exactly where I am. And for that little gift of perspective [and an absolutely extraordinary wife], I consider myself incredibly lucky.

Saturday, July 12, 2008

Other Good News

I can finally say with some certainty that within the next four weeks or so, my first CD will be released on I-Town Records, an independent record label based out of Ithaca, NY. The record is an all original Honky Tonk/Americana music CD called Letters to the Prison City and it consists of acoustic guitar, mandolin, fiddle, stand-up bass and steel guitar, as well as two and three-part vocal harmonies.

The record only came about as a result of some very generous friends who were as committed as I was to having this record released. One of those generous people is my sister, Vivienne Scholl, owner and Creative Director of Avenue 4 Design. She took some time away from her very busy schedule and designed all the artwork for it. I am very much looking forward to the release of this CD.

In the mean time, while I wait, here's a look at the cover.

That's all for right now. Have a great weekend!

Surgery Recovery

I left out that surgery recovery will be six-weeks. They want me up walking around the day OF surgery if I have it in me - made possible by an epidural - but apparently there will be no heavy lifting or a slew of other things (for which I'll likely get the full list on Wednesday afternoon). There goes joining the local Australian Powerlifting Team any time soon!!!

Which reminds me, I have gained 24 lbs. since I stopped Gerson Therapy last March. It still amazes me that a fellow patient actually gained weight on Gerson Therapy while I on the other hand was slowly disappearing. Well, once I gain another 16 lbs, I'll be back up to a reasonable weight - as long as it's muscle I gain.

Friday, July 11, 2008

Pre-Surgery Meeting

Thursday's meeting with Dr. Cagir went well. He answered our questions and surprised me with one answer. Apparently the surgery will require him to give me an incision from a couple inches above my navel to plenty of inches below it, not to mention the one I'll essentially be sitting on following the surgery. I was hoping the surgery was going to be one of those with a few small holes here and there. NOPE. It will be a nice big slice down the belly and since the surgery I'm having tends to need to be drained [doesn't THAT sound pleasant?], the doctor will staple me closed. This will provide the medical staff with easier access should there be a need for drainage and it will provide me some nice descending symmetrical dots along the incision line.

But I'm just having fun with it. I was surprised it's going to be such a large scar, but as far as the rest...what ever. It is what it is. Maybe I'll ask the doc the make the incision a big ugly zig-zag so I claim I was bitten by a shark. That's far cooler then saying I had surgery. I'll let you know what he says...

So, I gave Dr. Cagir the go ahead. And even better, he & his staff fulfilled my wish to be his first patient of the day. So it's 6:30 AM check-in and by 11 AM, I should be moderately sedated and in recovery. That's assuming all goes well and we'll know the answer to that when it's all said and done. I imagine Daniela will post something on here once she gets home.

In the mean time, I'm going to enjoy myself as much as I can between now and Wednesday. I wonder if they have a pool at the hospital...

Notary Public

If you are a local friend and also a Notary Public, I would love your support in having my most recent Health Care Proxy notarized. Either you could stop by the house and notarize the document or Daniela & I could come see you, because for me to go to a local notary, i.e., bank, and have the document notarized would require more standing then I am currently capable of.

My intention is to have the document notarized by noon on Tuesday July 15th. If this is something you can help me with, please give me a call or email me at


Wednesday, July 9, 2008

Today's Hospital Visit Had Some Great News!

I had a CT scan this morning and it was relatively uneventful other than my feeling quite spacey from the Barium I had to drink last night and then two more times this morning. Fortunately, the folks doing my CT scan were kind enough to leave the IV (used to inject iodine into my blood stream during the CT scan) in my vein so I could then walk over to the vampires and let them do the blood draw required of me prior to my meeting with Dr. Allerton (my chemotherapy doctor).

I'm sure Daniela & I will receive the results of my CT scan tomorrow when we meet with Dr. Cagir. As far as my meeting with Dr. A, he said my counts were good and my protein counts were slightly low but nothing to be concerned about as long as I continue eating plenty of protein, as my body is still healing from the chemotherapy. Dr. A reviewed my ultrasound results and said there was no longer any cancer in the lymph node closest to my rectum. That was great news!

Tomorrow Daniela & I will meet with Dr. Cagir to discuss my upcoming surgery. We'll also meet with the Nurse Practitioner who oversees new colostomy patients. I did adhere the colostomy pouch to my abdomen and I also put a handful of small polished stones in the pouch to see what it feels like to have some weight in it. I am real clear at this point that there is no way in hell I'm putting oatmeal or applesauce in the pouch. Substituting food for feces? Sure no problem. Just let me go puke a couple seventeen times first! It is amazing what some people are capable of...and that some people ain't me.

And on that note, the colostomy isn't really phasing me right now. My concern is strictly about the final results of the surgery.

Monday, July 7, 2008

Time to Get Over Myself

During my final hours of sleep today, I drempt I was in a post-production type factory or warehouse. I'm not quite sure how I got in there, but do remember that I had called Daniela and told her I would be home in 15 minutes. My motorcycle was outside waiting for me. The design of the building was quite irregular. Clearly as the business had grown, there had been numerous additions built onto the original building, because no hallway or walkway went in a straight line.

Eventually, I realized there was no order to the buildings and I clearly needed to ask for directions. However, I did not ask where the exit was, but instead I asked what how to get to a specific road - Route 5 . That was a bit peculiar since I had a band called Route 5 for a number of years. So I asked the first person I saw how to get to Route 5. She didn't know so I asked the next person I saw. He didn't know either and then I realized they both seemed a bit confused by my question. This continued as I walked through various buildings, halls, staircases, fenced in lots, etc. - it was endless. At one point a man and two women joined me in my search for a way out, but I eventually lost them and was back to the search on my own. This search was getting long. I had been trying to find my way out from 5:15 PM to 9:45 PM - I was certain Daniela was concerned about my whereabouts. Once I finally did make my way out, I caught a ride from a guy who could only drop me off a few miles from Auburn (my destination and in reality, my home town). Unfortunately, he wasn't quite sure where we were and I didn't recognize anything I saw.

When I finally woke up I was happy to realize I had only been dreaming. However, the next thought on my mind was the colostomy pouch and how I hadn't tried it on yet or more specifically, how I hadn't attempted to adhere it to various areas on my abdomen, as had been recommended, to find where would be most comfortable - either above my waste line or below. My next thought was, "Okay. It's time to "buck up" and start getting used to the thing." And then it hit me - my dream was the path I had been on thus far - infinite and without any logical direction - the exact same path I have been on in regards to the upcoming colostomy. I have done nothing to take the necessary steps to get myself more familiar with the pouch and the process of managing a colostomy. And all the while, the clock is ticking - July 16th will come whether I am ready for it or not. It's like I'm holding my breath as a threat if July 16th doesn't back off. And if I hold my breath long enough, I will wake up with the bag attached and not prepared in the slightest.

As I look at my dream, it seemed like one possible version of hell. I was lost with no direction - nothing familiar - and no one available to assist me in this endless version of chaos. And that again, is exactly where I am in regards to the colostomy pouch - no one has any directions for me because there is nothing else to tell me. Until I take the next step and watch the DVD I was given, read the pamphlet it came with and adhere the pouch to various spots on my abdomen, the entire process will be circling endlessly in a holding pattern.

So, I am going to put in the DVD right now and after breakfast I will adhere the stupid pouch to my abdomen and determine what will be the ideal location :-). And of course there has to be a gross requirement while getting comfortable with the pouch. And by "gross" I do not mean large or the total before deduction. I mean gross - disgusting - and yet another hump I have to get over. I was instructed to put applesauce or oatmeal in the bag to get an idea of how it will feel. Applesauce or oatmeal??? It has to be food??? Come on! I have to use food to mock the contents that will be excreted into my lovely little colostomy pouch? As I typed those last two sentences, I got the distinct impression they were my version of some last attempt to justify not taking this on today - some mental kicking and screaming or even worse, my pre-colostomy pouting.

And too bad, Bert. You're doin' it. So get over yourself...and break out the applesauce!!!

Sunday, July 6, 2008

Just Around the Corner

I felt great today and I have to tell you it's strange to feel great. What I'm used to is either having one hell of Gerson Therapy detox flare-up or the horrendous side effects from the chemotherapy & radiation. I am without any of that. Oh, it's great and I love it. I'm not saying it's not. But it's definitely a new experience when I compare it to the last year or so.

On Wednesday July 9th I go in for a pre-surgery CT scan followed by blood work and a visit with Dr. A - my chemo Doc. That should be pretty uneventful as long as my counts are good. I am imagine they will be. Like I said - I'm feeling great.

On Thursday July 10th, Daniela & I will meet with Dr. Cagir - my surgeon - and discuss the plan for my surgery on July 16th. We'll also meet with a Nurse Practitioner (whose name I don't recall at the moment) who will provide me with all the information I need about managing the colostomy.

After that, I will relax for four days. On the fifth day - July 15th - we will celebrate Daniela's birthday!!!!!!!!!! And in addition to the WILD PARTY we're sure to have, I will begin my pre-surgery prep. I will only drink clear fluids for the entire day along with enough laxatives to keep an elephant home from work!!!

Oh YEAH - good times. Hopefully I will be able to make it through all 15 seconds of "Happy Birthday" without having to excuse myself from the room in order to complete my hundred-n-forty-seventh trip to the bathroom. I suppose I could leave the door open and sing a little louder. Then again, maybe we should just celebrate her birthday on the 14th this year. She might like that a little better.

Saturday, July 5, 2008


I completely forgot to mention that Sue Cosentini & Michelle Newhart are having a yard sale on 527 N. Aurora St. and will donate all funds to the Bert Scholl Fund. Sue said they will likely be there until 7 PM this evening. So, if you're local, you're invited to stop by and peruse the goods and you might even be able to get some lemonade out of the deal!

Friday, July 4, 2008


I am happy to report that it's been three days and I have not had a bad reaction to the anesthesia I received for my ultrasound on July 2nd. The anti-nausea pre-meds did their job. What an absolute relief. And it was also quite a relief to not have the kind of next-day-pain that I had following my last ultrasound. Good things.

And it is still so strange to suddenly open my eyes and realize I am back in the recovery room waking up and the procedure is complete.

And that reminds me, I keep thinking of how weird it will be when I wake up to a stoma poking out of my abdomen and into a plastic bag. THAT is going to be WEIRD. Oh well. I imagine once it's all said and done, I'll have maybe a little something to say about it.

Thursday, July 3, 2008

Ultrasound Update

Dr. Cagir called early this afternoon with an ultrasound update. He informed me that a big portion of the tumor has melted away and he was very happy about that. He also said that he is hoping for more shrinkage because the tumor is still very close to the pelvic bone and he believes that more shrinkage is likely. Should the tumor be attached to the pelvic bone on the day of surgery, he will go ahead with the the tumor and organ removal and then prescribe another round of radiation to be certain that any remaining cancerous tissue is destroyed. And should that be the case, while he still has me on the table, he will also attach titanium clips to my pelvic bone to serve as markers for the radiation team.

This is not the kind of news I was hoping for, yet Dr. Cagir says he still feels very good about the outcome of the procedure and doesn't see any reason to be alarmed. I can't say I'm on the same page as him, but Daniela and I will speak with him in person on July 10th. The three of us agree that an in-person visit will make the specifics of of conversation easier to understand.

Wednesday, July 2, 2008

The Ultrasound

The anesthesia seems to have not gotten the best of me this time - no nausea. I had a little bit of a headache and my bladder seems a little slow to get going & sore as a result...?...but having no nausea was quite a relief.

We have yet to hear from Dr. Cagir about the results. I imagine we will hear from him on Thursday. On a better note, I had a blast giving the nursing staff and anesthesiologist a
hard time while I was in there. When ever you are in for surgery, they ask you multiple times who you are, what surgery you will receiving and who is giving you a ride home. They want NO mistakes and every patient delivered home safely.

Of course, when the anesthesiologist asked me what I was there for, I responded by telling her I was there to get my left leg removed. After she burst out laughing, she told me my answer wasn't funny. I felt I better tell her the truth before my name was changed IHOP. So, I corrected myself and I woke up with both legs still firmly attached. What really cracked me up was when the nurse who over-looked me before and after the ultrasound, told me what I said before I fully came to. As she is required, she again asked me who was going to give me a ride home. Apparently I told her, "Some dude in a rusty old car that I met at the diner this morning." Wow! Even when I'm half-unconscious, I still have it in me to be a wise ass. Fortunately, she was still laughing about it when I left.

I figure the laughter is was keeps me relatively sane as I anticipate and find my way through something I would rather not do, i.e., get knocked out and have a steel pipe shoved up my butt!!! And the appointment kind of felt like a test run for July 16th. Kind of. And all jokes aside, it was nice to have gone through the anesthesia procedure a couple times before the big one.

Oh, and in addition to the headache and my confused bladder, my arse was indeed a bit sore this evening. I imagine I will in for a little more pain tomorrow as the IV drugs ware off. Thank goodness I have my own batch at home (not IV of course). And again, some temporary head & butt pain is far more tolerable than nausea - at least in my world.


One more thing!

Wednesday July 2, 2008 I will receive a rectal ultrasound. Fortunately, I will be anesthetized due to the pain I would otherwise experience. And I am happy to share with you that I met with the anesthesiologist and I will be receiving anti-nausea medication this time around - orally and intravenously - to keep me from getting sick like the last time. Let's hope it works.

Also, the last time I had a rectal ultrasound, I was in a lot of pain for the day or two that followed. So, I can't be certain if I'll be up for posting a blog update. At best I will be laying on the couch watching the Red Sox play the Tampa Bay Rays. GO SOX!!!

Tuesday, July 1, 2008

My BIG Pretense

Up until this moment, I have not been honest about my upcoming surgery. My surgeon is not going to simply remove the tumor. He is also going to remove 40% of my large intestine - the last 40%: descending colon, sigmoid colon & rectum - along with the sphincter muscle and as a result, I will have a permanent colostomy. If you are unfamiliar, a colostomy is

a surgical construction of an opening from the colon through the abdominal wall to the outside of the body for the purpose of excretion.

To put it bluntly, maybe you have heard the expression "Opinions are like assholes - everybody has one." That will no longer be true in my case. Mine will simply be gone and all that will remain will be some skin sewn together and it will be an exit no more. I will therefore have a removable bag or - to use the current term - a pouch attached to my abdomen - a catch-all if you will. Essentially, the pouch will do the job of my non-existent rectum and be conveniently detachable.

So, right now at this moment, I have to tell you, I feel like I'm frozen. I have just let the cat out of the bag and now I have to deal with myself - with my emotions and judgments. Why? Because I have a HUGE problem with having a colostomy and an even HUGER problem with the idea of you knowing about it. I am clear that I have been uncomfortable about people knowing about the colostomy. And why? Well, if you think about it, I don't really want to know how you do what you do in the bathroom. And I'm sure the feeling is mutual. It's a topic we don't really discuss - at least I don't! And by sharing this with you, I'm now discussing it.

However, there was something else there for me. Something else even bigger that was keeping me from being honest or at least willing to share this aspect of my experience. I have known about this since March and couldn't bare the thought of making it public. I have been so confronted at the thought of sharing this information on the blog, that Sunday night (just two nights ago) I even went so far as to create a second blog - invitation only - for those folks who knew I was to have a colostomy. I was going to do my non-colostomy posts on this blog and then the colostomy posts on the other blog. So, I posted my first entry and asked those who were invited to keep quiet about it. Via Blogger, I had sent out my first batch of invitations and I was in the process of determining who else was to be added to the list.

Fortunately, my friend Jim Steigerwald - a dear friend of nearly 20 years - sent me an email after receiving his invitation from me to be a member of my private blog. Jim has always been a great friend - right from the day I met him. He's actually an amazing guy in general. Here's a piece of the response he wrote to me regarding my decision to keep the colostomy a secret:

I’m of the opinion that as soon as you move this to the forefront as part of your treatment, you’ll also move headlong towards a comfort level which you seem to be lacking. I only say this due to your desire to share the deepest inner workings of “Bert in recovery” on the blog, and are currently leaving out what I consider one of the biggest cogs to come along. This is a big part which is being brushed over. Though you’ve expressed jubilation about the surgery itself, the coming to terms with what the surgery is actually going to do is missing.

What I love about Jim is that he maintains a high level of integrity in his relationships such that he's only willing to speak the truth. Jim invited me to look at what I was unwilling to see and in my book that is a true friend and for that I am grateful to you Jim.

After reading Jim's email, it hit me how uncharacteristic of me it was to keep it a secret. Daniela had encouraged me to look at what had me choose to keep it a secret as soon as she learned of my decision as well. But I couldn't see it. And I was unwilling to make myself vulnerable to so many people when I hadn't a clue as to what this fear was all about.

Well, upon reading Jim's email it hit me. I have always felt pity for those people who have colostomies. In my mind, pity holds a judgment. Compassion would have me open my heart to a person with a colostomy or anything else for that matter. Pity had me look down upon them and feel sorry for them. And for me to be of those who are pitied and looked down upon disgusted me. And with that I suddenly realized how presumptuous and ignorant it was of me to have made up this story about how life was for others - that their life was one that deserved pity. I even took on the roll of being embarrassed for you if you had a colostomy. I feel no pride in being this way. However, I am incredibly grateful to have distinguished what it was that had stopped me dead in my tracks from being honest about my experience.

I also want to say I am clear that once I have fully come to terms with having a colostomy, and I am absolutely certain I will, it will just be a normal part of my life. And should someone go the path I went and pity me, that will be for them to deal with. However, I have not come to terms with having a colostomy. On Sunday, I met with a woman from the area who has an ileostomy - essentially the same as a colostomy except that with an ileostomy you have no large intestine at all. She was great. We talked about everything - the good, the bad and the ugly. She even left me a pouch with the adhesive attachment so I could start to determine if I want it above my belt line or below. Apparently, I will be given some choice in the matter. Well, I haven't even touched the thing since she left. I will, but right now whenever I ask myself, "Is today the day?" I feel the resentment stirring. Maybe tomorrow. Not today.

And since I have the floor, let me say something else. Even the word itself sounds unpleasant - col-OST-omy. Why can't it be a softer sounding word, like stoma? The stoma is the bit of intestine that will be the exit from my abdomen. It may look kinda ugly - all bright red and poking out, but its a nice soft sounding word - it works for me. Stoma. But colostomy? C'mon. To say it out loud, it almost sounds like you're clearing mucous from your throat. Col-AUGHST-omy. Yuck. Who came up with this word? Certainly not anyone who had one!!!

So what's the reason for the colostomy? Even if the radiation and chemotherapy removed any sign of the tumor all together - if it was 100% gone - it is standard procedure when possible, to remove any organ or tissue that he cancer has entered. If the rectum and sphincter were not removed, there would still be a strong possibility of the cancer returning to that area. And if it did return, statistics show that because it has grown through the rectal tissue and entered the sphincter muscle, should it metastasize, it would very likely metastasize to my pelvis (as opposed to my lungs and liver). And my surgeon, Dr. Cagir, made it very clear to me that unlike lung or liver metastasis, pelvic metastasis is accompanied by an excruciating level of pain that no living - or should I say dying - person would want experience. He saw it once and told me the maximum dose of morphine did not relieve the pain. So as you can imagine, I am all for having the surgery. I will do whatever it takes to stay healthy. So sign me up. I plan on sticking around.