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.

What's Next

I am finally off of antibiotics!!!! Man - these things were making me miserable. I was down right depressed this afternoon and not even for a good reason. Hell, I should be the happiest person in the world right now. And Daniela reminded me that being on two quite powerful antibiotics will do that to you. She's right.

So what's next is supposedly another series of radiation treatments [I wonder if my surgeon is a sadist...just kidding] and definitely another series of chemotherapy treatments. There has yet to be a specific decision as to which type of chemo I will receive. I imagine that will happen on September 3rd at my next day of appointments.

Sure I'm cancer-free right now (and I plan to keep it that way) but I'm not quite certain when the oncological staff consider me cancer-free. And to tell you the truth I see it this way. I currently do not have cancer in my body. Once I have completed the upcoming radiation and chemotherapy treatments and the only appointments that remain are my monthly blood tests and...I dunno...quarterly CT/PET scans, THEN I will truly consider myself cancer-free.

That may seem a bit odd. Maybe it's just my way of keeping my shoulder to the wheel for these upcoming chemotherapy and radiation treatments - ya know? I can't imagine they will be any more pleasant than they have been in the past. And I doubt they'll be so fun that I'll be inviting people over for chemo. Not to mention I'd probably need a license for that. Can you hear the medical board? I'm sorry sir, you want to do what? Wow. That would be a bit odd. But don't worry - I wont put you on the spot.

So as they say: It ain't over until the fat lady sings or should I say until the fat man sings [that would be Jerry Garcia, of course]. Granted he ain't doing much singing lately, but once it's all said and done and I'm financially back on my feet, I will throw one hell of a cancer-free party and there will be plenty of songs by Jerry Garcia playing over the PA - in between the sets of live music, of course.

Oh and one more thing. My CD is supposed to be here any day! I'll definitely let you know.

My Advocate

As I look back on my path, I realize that there have been many times when I have been far too under the influence of treatment to be able advocate for myself. Fortunately, Daniela has been with me from the beginning and powerfully advocated for me when I was unable. Yet as a result of my being "under the influence of treatment," I have not provided as a clear a portrayal of my experience as I would have otherwise been able to do.

So, I have invited Daniela to share with you what I feel are some very important conversations and or experiences that she has had with the practitioners I have worked with. We have had enough discussions about this, that for now, you can expect to hear from her every Monday. Again, I feel that if you truly want to know what my experience has been, it only makes sense for Daniela to share what advocating for me has been like for her. I definitely look forward to what she has to share.

It's Been A Long Road

Blogging has been a little tough for me since I began my latest antibiotic regimen. Not only was I given an antibiotic for the possible infection near the rear suture, but I also received an antibiotic for a UTI (urinary tract infection) that resulted from the catheter which was required for surgery/recovery. So, I've been on Cipro and Flagyl - oh the joy. Being as sensitive to drugs as I am, these antibiotics have knocked me for a loop. I sleep about 12 hours a day and lately with a nap in between - and that's even with the enormous amount of water I've been drinking. Well, I just finished the Cipro yesterday and I have two or three more days of Flagyl left. It will be nice to feel human again.

And I was hoping I could feel human for a just a little bit longer since chemotherapy will likely begin in the next couple weeks or so. It's really hard to think about the upcoming chemotherapy. And I'm really hoping that I'm making it out to be more than it was because I am SO not looking forward to it. I I'm hoping the chemotherapy will be easier than I recall.

And another aspect to that is work. During my last chemotherapy treatment I was completely incapable of working. My hope is that this "final" treatment (I use quotes since nothing is certain) is on the shorter side of the possible three-to-six month treatment. A lot of that has to do with the fact that I have been able to go for walks in the local parks or through the neighborhood. Now that I am out and about lately, I see people working either on their yards or at their own business and I realize how long it's been since I have been able to do so. "You need to heal so that you don't have to do this again...rest is important"...etc, etc. Easy to say and real hard to do after being on bedrest until mid-July. The only thing that keeps me sane is waking up from a two-hour nap after only being awake for four hours - it reminds me that healing is a slow and powerful process. And once again, like I did so many months ago, I choose to let go of how I think it should be or how I think treatment/healing should look.

But don't think for a second that doing is as easy as choosing. I have to keep bringing myself back to my commitment to letting go. I mean, c'mon, it's been a long road and I want to start earning my money. Hell, I'd shovel manure in a horse barn if I could. This definitely drives me nuts. Granted, I did just have major surgery, but as I said, it has been a LONG time.

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.

One Heck of a Day!!!

First of all I want you to know I came home from the hospital at the end of the day on Thursday. However, it was one heck of a long day...

The day started with a CT scan and a blood draw for lab work as scheduled. Then Daniela & I took Beau to a playground where we played with Beau then had a little lunch since my next appointment wasn’t until 1:20 PM with Dr. Allerton (my chemotherapy doctor). At the meeting with Dr. Allerton, we discussed the different chemotherapy options which he said said he would not start up for another four to six weeks. After that was discussed he told us he was amazed the cancer was gone. He kept saying different things like “I’m amazed - I don't think you understand how rare this is- We don’t see things like this – None of us thought this was going to happen. A T4 tumor usually involves some major difficulties...” he repeated these sentences a number of times and when he finally let up I said, “Feel free to say anything like that as long as you like – as long as it’s true.” He smiled and I let him know I believe it’s a result of the Gerson Therapy and explained my theory that due to such low toxicity in my body, the chemo & radiation were far more effective.

Once we wrapped up in the exam room, he walked us to one of the administrative desks to set up my next appointment. What followed next amazed me. Now you need to understand that Dr. Allerton clearly has a great sense of humor, but as far as the emotions go, he keeps things quite professional. Given he’s that kind of guy, I went to shake his hand and say thank you and instead he said, “Let me give you hug. This is amazing.” Coming from him. A guy who sees the worst of it every day and knows the odds, it felt pretty darn good to get that hug from him. I feel like I’ve won the Triple Crown.

Following the meeting with Allerton we went to Dr. Cagir’s office to discuss the results of the CT scan. The CT scan showed the fluid was still present and the recommendation was to drain the fluid from the suture area and send me home with an antibiotic prescription. Naturally, I asked what the process entailed and it was explained to me that a needle would be pushed through my behind and into the cavity where the fluid was building up so it could be drained. Once drained, it would be determined if the fluid was infected. If infected, a drainage catheter would be installed and I would be sent home on an antibiotic with catheter to be removed in a week or two. If not, I would simply be sent home on oral antibiotics.

Well, the fluid was drained and I was sent home on an oral antibiotic. HOWEVER...

When that doctor told me he was going to stick a needle through my behind and into...some cavity...my mind was spinning like a top. I could barely think straight. You’re going to stick a needle all the way through my butt? Okay. I won’t pretend. I don’t exactly have a whole lot of butt to go through. But my butt’s my butt. And I would prefer to NOT stick needles THROUGH IT. HOLY CHRISTMAS. I said, “Doc. I want this to work well for all of us. And the idea of a big ole needle getting pushed through my butt.... I am FREAKING OUT. If I flinch while you’re doing it. Man-oh-man.”

Yeah folks. Forget humility. Forget pride. This guy was going to impale me with just a little numbing agent to ease the pain. Yes I said impale me because in my world that’s exactly what he was going to do. I must have confirmed with him and his staff at least 53 times that they were going to sedate me. And I must have been white as a ghost because they sedated me - heavily. Hell, I woke up on the couch on Friday morning and Daniela had to remind me what happened the day before.

Needle through my butt and into the “blah-blah-blah” cavity. No, no, no, no, no. Say it ain’t so!

[note from wifey: bringing bert home last nite was memorable. the nurse who wheeled bert out to the curb left us with the instructions to relax, take it easy, do nothing strenuous...so bert immediately says he wants to go for a walk when he gets home & is that ok? she said "what kind of walk" (she was suspicious, clearly, so wisely inquired further). he then says, "i like to go about a mile or so".

now, keep in mind, he's on MAJOR painkillers, and just woke up from almost total sedation. downright loopy, actually, and now declares he wants to go bloody HIKING when we get home??? we've only been at the hospital for about 10 looooong hours, had minor surgery, and next we're up for HIKING??? i shot the nurse a look that begged " please god, not hiking..." so she says he can only go for a short walk with someone...

so, we proceed out to the car, with bert telling me he's going for his walk anyway, and does not need assistance. i had images of me out in the fields up by our house trying to find bert, only to discover him laying in some field, claiming he can now communicate with crickets...

we began to head home, and he's fully outta his mind. just yammering up a storm, about nothing that mae too much sense. next he wants pizza. we stop at Sopranos Italian market, and i said i'd go in for him. he says, " i can do it myself, i'm not sick you know!" so i said fine, go ahead...he comes out with a large bag...i'm trying to figure out what's up with the bag?
"hon, what did you get?"
(big grin...) "apple pie!!!"
"how much hon?"
"the WHOLE PIE!!!"

when we got home, he remembered the walk...i had to lure him onto the couch for a minute, thinking the mystical powers of the couch would beckon him to sleep. thank goodness for mystical-couch-powers...worked like a charm....zzzzzzzzzzzz]

and to cap it all of, bert opened the fridge this morning, like a little kid at christmas morning, and says to me, "WHO GOT PIE???????????????"

Morning CT Scan

For the last four days or so I have taken one to two one-mile walks per day. It is such a wonderful feeling and we live in absolutely beautiful country. To walk with one another means so much to both of us. We went for walks evening after evening shortly after we moved out here. Quiet roads, farms & wetlands, beautiful trees and skies. It provides so much for us. And this week is the first week we've been able to walk together since the last walk we had together - on May 11, 2007 - the day before the benefit. Our walk is the big event of our day and we look forward to it each time. It's great to have it back.

Thursday August 7th, I will have a morning CT scan and then blood tests and an afternoon meeting with Dr. Allerton (my chemotherapy doctor). Fortunately, my meeting with Dr. Alleton will not include reconnecting my chemo port. Man, I feel nauseous just thinking about starting chemotherapy again. No reason to mention anymore about that right now.

My big concern is my CT scan and if I have an infection that an oral antibiotic can't treat. Like I said - I hope to find out on Thursday afternoon because if I need to be re-admitted, I'd prefer to do right then and there - not after I've already driven home.

Another CT Scan For Thursday

I am doing well as far as how the antibiotic impacts my stomach. Now I only take the stuff on top of a big meal. And I've got back up options shared from others as well if my stomach is still irritated.

The rest of my body feels pretty good. I go on about two walks a day. This morning I was feeling pretty depressed - I don't want a colostomy and in fact don't want anything to do with a colostomy. So, from sitting in my recliner depressed, I got up off my butt and went for an hour long walk. Not only did it feel great as far as my healing body goes, but it just about vanished any feelings of depression. Exercise is a beautiful thing. Plus I saw two neighbors I really like and got to tell them the great news. I still can't tell people I'm cancer-free without crying.

Sitting is still a little painful, so my Nurse Practitioner has scheduled another CT Scan for Thursday. And of course, if the infection is worse, they will re-admit me and insert a drainage catheter as well as prescribe me an IV antibiotic. I'll let you know on Thursday. Believe it or not, I'm shootin' for not being readmitted.

Anitbiotics x 2

Currently I am taking Ciprofloxacin HCL aka Cipro as well as Metronidazole aka Flagyl. Both of these antibiotics make me feel either nauseas or dizzy or give me a headache or leave me feeling dehydrated. Naturally I am drinking a great deal of water throughout the day as well as only taking them after a meal in order to avoid these side effects as much as possible.

If you have taken either of these drugs and experienced similar side effects and found a way to reduce or counter them, please share that information with me. Just post a note here on the blog. Thanks.