Some OTHER Side Effects

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

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

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

I'll Try Not to Should on Myself (or Others)

In order to share a passage from Eckhart Tolle's A New Earth - Awakening to Your Life's Purpose, I must first acknowledge that I stopped reading it a while ago and never finished it. I actually didn't get too far and have since picked it up and started again in the early pages of the book. What Tolle wrote on page 41 so succinctly expresses how I have felt about my diagnosis & treatment since the very early days of it all. He writes:

Life will give you whatever experience is most helpful in the evolution of your consciousness. How do you know this is the experience you need? Because this is the experience you are having at this moment.

I find there to be so much power in those words power - power to take on my life peacefully. And the freedom to experience my life as it is vs. how I believe it should be.

And I am clear I have not discovered this on my own. These teachings have existed in religions and faiths around the world long before I ever woke up to the world around me. However, once I was diagnosed and had my life turned upside down, I quickly began to let go of how I belived life should be. And now for my treatment to include a permanently life-altering surgery, I have again, found myself letting go of how I believe life should be. So I suppose being aware in each moment that I am having the experience I need to have in order to further the evolution of my consciousness may take some time to put into pracrtice and it is who I am committed to being each day. Even when I am late for an appointment and the person in front of me is driving incredibly slowly.

Among the People & Chaos

A week has gone by and no blog entry by me. Well, the good news is I am doing quite well. The reason for no entries from me is that my internet connection was nearly non-existent from 8/9 thru 8/16. But there was a good reason for it. My in-laws blessed us with an all expense paid camping trip to the Jersey Shore - something we obviously can not afford right now.

And man-oh-man it couldn't have been any more beautiful. My pain level has been slowly decreasing so I was able able to go to the beach multiple times (absolute heaven), go to the boardwalk a couple of times, have a campfire, spend time with my in-laws throughout it all and get to know Daniela's extended family a lot better (her Aunt, Uncle, cousins and second cousins). Everything was perfect - even the weather.

And what amazed me was my reaction to being in public. Again, it was the "adjustment period." On our third night on the shore, Daniela's family brought us to the boardwalk - with all the rides and games and lights and music and bells and whistles and vendors on microphones loudly announcing what they have to offer. It was a lot of energy and a lot of excitement. So, it wasn't more than 15 minutes before I was clear I needed to step away from it all.

While everyone ate their delicious boardwalk food, I took a walk along the beach to decompress from all the chaos and intense energy. With all that happening, my anxiety level was getting high and since it is not my personality style to get anxious around crowds, I knew it was the post-surgery adjustment period. At one point while on the boardwalk, I even had a concern about not being able to protect my family because my body is still healing - very primal but very for a moment, it was real.

So, after about 20 minutes on the beach, I was ready to be among the people and the chaos again. So we walked and watched the kids go on rides and play the games and had a lot of fun. But then in crept in the anxiety again. Fortunately, I found a quiet area of the boardwalk away from the bright lights where I was able to find a little peacefulness, but not be too far from everyone.

A little while later, Daniela's Uncle Robert happened to walk up my way and he and I had a great conversation about the post-surgery anxiety/adjustment period. He's been through it following a surgery he had not too long ago and kindly shared his experience with me. It was so great to have my experience validated - to know that someone else could understand what I was going through - first hand. And as he shared what he went through, I was able to see where I had mistaken anxious thoughts for the truth. For instance, while I was in the hospital, I thought the nursing staff was resistant to administering my morphine when I asked for it. I was telling Robert about this, and as I was sharing with him I realized this was one of those anxiety thoughts - "them vs. me" - and I had believed it to be true until the moment that I was sharing it with him. The reality is, the staff was more than willing to give me morphine when ever I asked for it as long as it was no more than every two hours as prescribed. Why I thought they were unwilling to administer it...I don't know. But I believed it while I was there.

The anxiety is still very present for me - not all the time - but throughout the day I experience random moments of concern where I wonder if I am doing something wrong. So I will check in with Daniela and make sure we're good or just realize that my mind is at it again and go back to what I am doing. To tell you the truth, it mostly shows up in public, not so much at home. So, whenever in public I mind my thoughts and remember to enjoy myself.

At the same time, I am still slow to see people even here at the house. Being with large groups seems to be difficult at times and I can't always tell when it will be. If I find myself getting cranky or irritable I know it's time to step away for a moment and have a little quiet. Normally I would find all of this very humbling, but with all I have been through in the last 16 months or so, I can really say I have learned to accept what my body needs - of course regular reminders from Daniela don't hurt either.

Finding My Way Through

As far as colostomy care goes, I feel confident. It ain't exactly rocket science. The "getting used to it" is about 99% mental. I have my ups & downs with it. I also realize my only exposure to colostomies in the past was with someone who didn't control for gas and would occasionally "cloud the room" quite heavily and with no warning. One of my big fears was that I would have no control and I would do the same. Well now I know, I need not have that concern because it's no different than before I had the surgery. If you want to control for, it's not a problem. If you don't want to, I guess you could clear a room in no time. Fortunately for you, I prefer to former.

I have been keeping up on my walking and as a result, I feel well. And the pain near my suture seems to be decreasing a bit and that is good. I was a bit surprised by my need to be sedated for the draining. I generally have a high tolerance for pain. But as I look back on the last 16 months, I realize I have been through a great deal of pain - consistent - never ending - chronic pain - and it has definitely knocked me down a bit. I imagine it may take a while to get back to where I was. And getting there will be nice.

Getting back to my old self again will also be quite nice. There's a vulnerability that has shown up for me following the surgery. Part of it is simply because I had abdominal surgery and could get a hernia if I do anything to strenuous. No thank you. The other part is mental and I have learned from talking to other folks who had major surgery that there is often an adjustment period that follows. For me its a degree to which I don't feel 100% safe in the world. It's all mental, so essentially it's not real. But then again, everything is mental when it comes down to it, so it is in essence it's real until I find my way through it.

I have to say I am quite surprised that I was not informed of the adjustment period since it's pretty powerful. As I look back, I can say I was told that there would be just that - an "adjustment period." But I prefer direct as opposed to vague. You know? Give it to me straight. Tell me I may question myself or feel vulnerable in the world. Because believe it or not, going to the supermarket was a big deal for me the first time I went (just the other day). I walked in there thinking to myself, "I was just cut open - front & back - I better be careful." I can't imagine what I'd feel if someone bumped into me. Already once I squatted and hit my rear suture on the inside door handle of the car and damn near saw stars or went blind for a second or something - I'm not quite sure. But what matters most is the time it takes to adjust. It's powerful and must be respected or I will find myself under more stress than I need. And, I feel good being aware of the adjustment period. It allows me to maintain some objectivity as I find my way through.

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.

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!!! : )

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.

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.

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...

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.

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.